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National Guideline Alliance (UK). Mental Health Problems in People with Learning Disabilities: Prevention, Assessment and Management. London: National Institute for Health and Care Excellence (NICE); 2016 Sep. (NICE Guideline, No. 54.)
This guideline has been developed to advise on the prevention, assessment and management of mental health problems in people with learning disabilities. The guideline recommendations have been developed by a multidisciplinary team of healthcare and education professionals, carers of people with learning disabilities and guideline methodologists after careful consideration of the best available evidence. It is intended that the guideline will be useful to clinicians and service commissioners in providing and planning high-quality mental health care for people with learning disabilities while also emphasising the importance of the experience of care for people with learning disabilities and their carers (see Appendix A for more details on the scope of the guideline).
Although the evidence base is rapidly expanding, there are a number of major gaps. The guideline makes a number of research recommendations specifically to address gaps in the evidence base. In the meantime, it is hoped that the guideline will assist clinicians, and people with learning disabilities and their carers to prevent, identify, assess, and manage mental health problems, by identifying the merits of particular treatment approaches where the evidence from research and clinical experience exists.
Clinical guidelines are ‘systematically developed statements that assist clinicians and service users in making decisions about appropriate treatment for specific conditions’ (Mann, 1996).They are derived from the best available research evidence, using predetermined and systematic methods to identify and evaluate the evidence relating to the specific condition in question. Where evidence is lacking, the guidelines include statements and recommendations based upon the consensus statements developed by the GC.
Clinical guidelines are intended to improve the process and outcomes of healthcare in a number of different ways. They can:
Guidelines are not a substitute for professional knowledge and clinical judgement. They can be limited in their usefulness and applicability by a number of different factors: the availability of high-quality research evidence, the quality of the methodology used in the development of the guideline, the generalisability of research findings and the uniqueness of individuals.
Although the quality of research in this field is variable, the methodology used here reflects current international understanding on the appropriate practice for guideline development (AGREE Collaboration, 2003), ensuring the collection and selection of the best research evidence available and the systematic generation of treatment recommendations applicable to the majority of mental health problems in people with learning disabilities. However, there will always be some people and situations where clinical guideline recommendations are not readily applicable. This guideline does not, therefore, override the individual responsibility of healthcare professionals to make appropriate decisions in the circumstances of the individual, in consultation with the person or their carer.
In addition to the clinical evidence, cost-effectiveness information, where available, is taken into account in the generation of statements and recommendations in clinical guidelines. While national guidelines are concerned with clinical and cost effectiveness, issues of affordability and implementation costs are to be determined by the National Health Service (NHS).
In using guidelines, it is important to remember that the absence of empirical evidence for the effectiveness of a particular intervention is not the same as evidence for ineffectiveness. In addition, and of particular relevance in mental health, evidence-based treatments are often delivered within the context of an overall treatment programme including a range of activities, the purpose of which may be to help engage the person and provide an appropriate context for the delivery of specific interventions. It is important to maintain and enhance the service context in which these interventions are delivered, otherwise the specific benefits of effective interventions will be lost. Indeed, the importance of organising care in order to support and encourage a good therapeutic relationship is at times as important as the specific treatments offered.
The National Institute for Health and Care Excellence (NICE) was established as a Special Health Authority for England and Wales in 1999, with a remit to provide a single source of authoritative and reliable guidance for service users, professionals and the public. NICE guidance aims to improve standards of care, diminish unacceptable variations in the provision and quality of care across the NHS, and ensure that the health service is person-centred. All guidance is developed in a transparent and collaborative manner, using the best available evidence and involving all relevant stakeholders.
NICE generates guidance in a number of different ways, 3 of which are relevant here. First, national guidance is produced by the Technology Appraisal Committee to give robust advice about a particular treatment, intervention, procedure or other health technology. Second, NICE commissions public health intervention guidance focused on types of activity (interventions) that help to reduce people’s risk of developing a disease or condition, or help to promote or maintain a healthy lifestyle. Third, NICE commissions the production of national clinical guidelines focused upon the overall treatment and management of a specific condition. To enable this latter development, NICE has established 4 National Collaborating Centres in conjunction with a range of professional organisations involved in healthcare.
Once a national guideline has been published and disseminated, local healthcare groups will be expected to produce a plan and identify resources for implementation, along with appropriate timetables. Subsequently, a multidisciplinary group involving commissioners of healthcare, primary care and specialist mental health professionals, service users and carers should undertake the translation of the implementation plan into local protocols, taking into account both the recommendations set out in this guideline and the priorities in the National Service Framework for Mental Health (Department of Health, 1999) and related documentation. The nature and pace of the local plan will reflect local healthcare needs and the nature of existing services; full implementation may take a considerable time, especially where substantial training needs are identified.
This guideline identifies key areas of clinical practice and service delivery for local and national audit. Although the generation of audit standards is an important and necessary step in the implementation of this guidance, a more broadly-based implementation strategy will be developed. Nevertheless, it should be noted that the Care Quality Commission in England, and the Healthcare Inspectorate Wales, will monitor the extent to which commissioners and providers of health and social care and Health Authorities have implemented these guidelines.
This guideline has been commissioned by NICE and was primarily developed within the National Collaborating Centre for Mental Health (NCCMH). The NCCMH is a collaboration of the professional organisations involved in the field of mental health, national service user and carer organisations, a number of academic institutions and NICE. The NCCMH was funded by NICE and led by a partnership between the Royal College of Psychiatrists and the British Psychological Society’s Centre for Outcomes Research and Effectiveness, based at University College London.
On 1 April 2016 NCCMH was amalgamated into the National Guideline Alliance (NGA) at the Royal College of Obstetricians and Gynaecologists, along with the National Collaborating Centre for Women and Children’s Health and the National Collaborating Centre for Cancer.
The technical team provided leadership and support throughout the process of guideline development, undertaking systematic searches, information retrieval, appraisal, systematic reviewing of the evidence and training for the GC in the process of guideline development. Service users and carers received additional training and support from the NICE Public Involvement Programme and the NICE Guidelines Technical Adviser provided methodological advice and assistance.
All GC members made formal declarations of interest at the outset, which were updated at every GC meeting. The GC met a total of 12 times throughout the process of guideline development. The GC was supported at all stages by the technical team, with additional expert advice from special advisers where needed. The committee oversaw the synthesis of research evidence and all statements and recommendations in this guideline have been generated and agreed by the whole GC.
This guideline will be relevant for adults, children and young people with learning disabilities and covers the care provided by primary, community, secondary, tertiary and other healthcare professionals who have direct contact with, and make decisions concerning the care of, adults, children and young people with learning disabilities.
The guideline will also be relevant to the work, but will not cover the practice, of those in:
The guideline makes recommendations for the prevention, identification, assessment and management of mental health problems in people with learning disabilities. It aims to:
The guideline is divided into chapters, each covering a set of related topics. The first 3 chapters provide a general introduction to guidelines, an introduction to the topic of mental health problems in people with learning disabilities and to the methods used to develop them. Chapter 3 to Chapter 9 provide the evidence that underpins the recommendations about the prevention, assessment and management of mental health problems in people with learning disabilities.
Each evidence chapter begins with a general introduction to the topic that sets the recommendations in context. Depending on the nature of the evidence, narrative reviews or meta-analyses were conducted, and the structure of the chapters varies accordingly. Where appropriate, details about current practice, the evidence base and any research limitations are provided. Where meta-analyses were conducted, information is given about both the interventions included and the studies considered for review. Clinical summaries are then used to summarise the evidence presented. Finally, recommendations related to each topic are presented at the end of each chapter. Full details about the included studies can be found in Appendices J, K, L, M and W. Where meta-analyses were conducted, the data are presented using forest plots in Appendix O (see Table 1 for details).
Appendices.
All rights reserved. NICE copyright material can be downloaded for private research and study, and may be reproduced for educational and not-for-profit purposes. No reproduction by or for commercial organisations, or for commercial purposes, is allowed without the written permission of NICE.
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