Resource Manual for
Commissioning and
Planning Services for
SLCN
Professor Pam Enderby
Dr Caroline Pickstone
Dr Alex John
Kate Fryer
Anna Cantrell
Resource Manual for Commissioning and Planning Services for SLCN 2 Acknowledgements
The RCSLT and the Project Team would like to thank all those who assisted in drafting this guidance. We have received valuable advice from many reviewers from within the speech and language therapy profession who have given up their time generously. Experts on particular topic areas from related professions have also been consulted and assisted with detail. Service Commissioners and senior managers have commented on drafts showing patience and fortitude! We would particularly like to thank the many who contributed to the focus groups which helped to shape this document.
Resource Manual for Commissioning and Planning Services for SLCN CONTEXT
The aim of this section is to set out the context for this resource. This work forms part of a range of tools which can support leaders with service planning and delivery, in line with both government and local priorities.
It is essential for service providers to demonstrate quality and productivity and to: show value for money
be able to provide a strong financial argument for the need to invest in services for people with speech, language, communication and swallowing needs
demonstrate improvements in outcomes for individuals, families and society Value for money is not about being the cheapest option but about delivering the most return (impact, best outcomes) for a given investment over time.
The key drivers for change to services include:
1. The broad context, which can be divided according to the following factors: Political and Legislative factors
Economic factors Social factors
Technological factors
2. The near or local context, including: Localised policies
Addressing local needs Service provision Workforce The evidence base
THE BROAD CONTEXT (MACRO-ENVIRONMENTAL ANALYSIS): FACTORS FROM THE WIDER WORLD
The Macro-environmental analysis commonly takes the form of a PEST analysis: Political and legislative factors
Economic factors Social factors
Technological factors
Political and legislative drivers
Devolution has resulted in changes to the powers of the different institutions across the UK.
The government in power at Westminster maintains responsibility for policy and legislation in relation to key areas including: tax, benefits, foreign affairs, international development,
Resource Manual for Commissioning and Planning Services for SLCN 4 trade and defence for the four countries of the UK. Government in Westminster is also responsible for health, social care and education in England, but these areas are devolved for Northern Ireland, Scotland and Wales.
As a result of devolution, each country of the UK may have different parties in power, with the possibility of increasing powers in the future. The impact of this is the diversification of policy and direction of travel.
Legislative drivers
The main areas of UK-wide legislation that are relevant include the following themes: Human Rights
Disability Discrimination Equality
Though there is different local interpretation, these far-reaching legal instruments define the rights and responsibilities of people and those commissioning and providing services for them.
Public protection has also been strengthened through the introduction of registration of professionals, for example, through the Health Professions Council.
There is separate legislation relating to health, education and social services in each of the devolved administrations in England, Northern Ireland, Scotland and Wales.
Economic
The current challenging economic backdrop will have a significant impact on the financing of public services, with local planners and commissioners prioritising services which are value for money, evidence based and releasing cash through innovation.
Social
In order to plan and deliver services, it is essential to identify the demographic factors relevant to speech and language therapy (SLT) and the challenges that these bring. The population is aging: people are living longer.
The birth rate is falling: most families are having fewer children
The infant mortality rate is also falling, with more children surviving premature birth or health problems or injury in infancy.
The urban population is growing.
The proportion of the population in employment is falling.
The proportion of the population with English as an additional language is increasing, particularly in urban areas.
THE NEAR OR LOCAL CONTEXT Localised policies
Central to the new reforms is the emphasis on local decision-making within a national framework. Across the four countries of the UK there are requirements to provide services to accord with local need and influence. In England there is a particular focus on
increasing the range of potential providers (plurality of provision) with commissioners having a role to stimulate the market.
For each country, arrangements have been established to assess whether commissioners are achieving better health outcomes for the local population. Part of this process will be an assessment of how well commissioners are performing against specified
competencies/indicators/targets. For example, in Northern Ireland these targets are based upon high-level outcomes linked to local strategies.
With the devolution of power to local levels, there is a focus on developing more robust accountability. There is an emphasis on joint working to support integrated commissioning, service planning and provision across health, social care and education.
There are different approaches to this development with different structures and
commissioning and performance management arrangements being established across the UK. The dominant theme in strengthening accountability is “putting service users at the centre” with respect to:
Access and self–referral
User voice at strategic to operational to individual case management Population/local engagement
Information and advice for users, parents/ carers Patient Rights
Self management of conditions
Some localities will be commissioning or planning speech and language therapy services as a single service whilst others will be commissioning integrated services, cutting across traditional boundaries, with health services integrated with education or social services. In many areas, this has already happened for children's services.
It is recognised that, often, no single agency can deliver best outcomes for their service users by working in isolation. Joint commissioning is advocated wherever the meeting the needs of individuals requires contributions from a number of agencies.
Similarly, some service planners or commissioners will be organising services around disease groups, such as services for persons who have survived a stroke. In either case, it will be important for speech and language therapy managers to liaise with other services to ensure that SLT provision is incorporated in their service plans.
Special arrangements are in place for commissioning services for unusual, low incidence or costly interventions. Speech and language therapy managers should identify the specialist commissioning procedures that may be required for individuals requiring
Resource Manual for Commissioning and Planning Services for SLCN 6 particular interventions such as costly augmentative communication aids, protracted or intensive interventions.
Addressing local needs
In general terms, the UK is experiencing a number of long-term demographic changes (some of which are identified above).
There is significant local variation within these general trends. It is important to understand what these changes and variations imply in relation to the provision of local SLT services. Other local factors to be taken into consideration include: employment, cost of living, housing, transport and, particularly, levels of deprivation.
There are information resources available online from which planners, commissioners and providers can find out more about local and regional demographic factors. Some of these can be found signposted on the RCSLT website www.rcslt.org .
Local public health teams will also be able to sign-post local services to relevant data and information for their area.
There will also be learning from data collected by services. The RCSLT has developed an online tool called Q-SET, the Quality Self- Evaluation Tool to help you collate local SLT service derived information http://www.rcslt.org/resources/qset . Q-SET should be used alongside national and local data to support service planning and evaluation of service delivery.
Through completing Q-SET, provider services can:
use the resource every 9-12 months to review progress in meeting action plans and to demonstrate service enhancement
compare their service with other similar service types e.g. urban, rural, acute, community, adult, paediatric, education, 3rd sector
demonstrate that their service meets the needs of the service users
identify areas of strength and generate action plans relating to areas of development. submit the results as part of the evidence for a clinical audit
retain ownership of the monitoring and development of services ensuring that strong professional standards are maintained in the context of multi-agency teams
Service providers completing Q-SET will support commissioners to: reduce the ‘postcode lottery’ of service availability and quality have high quality information that is relevant and accessible
have an overview of developments, trends and initiatives within the service have accurate and timely statistics to support performance management and
monitoring
collect data to contribute to the debates on benchmarking. Where benchmarks do not yet exist Q-SET will enable Commissioners to contribute to this in the future
collect examples of good practice to inform other pieces of work and the development of services as a whole.
Locally derived information will help SLT services to illustrate: the numbers of patients/clients seen
sources of referral
amount of resource used in providing a service to the client e.g. number of sessions and skill mix
nature and severity of the disorder, disability, psychosocial impact at the onset of intervention
nature and severity of the disorder, disability, psychosocial impact at the completion of intervention.
level of satisfaction with the service.
Service provision
Speech and language therapists have a role in delivering specialist and targeted support to clients, carers and their families. Speech and language therapists can also reduce long-term demands on services by addressing immediate needs that arise from circumstance rather than underlying impairment. Providing training for the wider workforce is integral to the speech and language therapists core role, as outcomes for people with speech, language and communication needs SLCN are improved when the whole workforce is able to contribute appropriately to care pathways.
SLTs also work with the wider workforce contributing to the public health agenda, promoting health and well-being in respect of communication and swallowing. There is little awareness outside the profession of the role of speech and language therapists in preventing the development of speech and language impairments and the further impact and consequences of different speech, language and communication disorders upon health, education, social integration and employment.
The challenges of meeting the speech, language and communication needs (SLCN) of a given population are best understood through a social (participative) model. Key elements of a total service specification will start with:
identifying the needs of the service user, parent or carer for support and information identifying/assessing and diagnosing specific SLCN and providing appropriate
intervention.
considering needs of service users within the environments they encounter
training the wider workforce that interfaces with them to maximise opportunities for positive outcomes.
The balanced system (diagram 1) below illustrates the wider context for how SLTs contribute to this range of activities. The needs of service users should be considered in service specifications. The role of SLTs in supporting the active participation of service users in service planning, adapting the environment and enskilling the workforce is as relevant as the SLT role in identification and intervention.
Resource Manual for Commissioning and Planning Services for SLCN 8
Workforce
Careful planning of services, including joint commissioning, will help to shape the workforce and inform the skill mix required to deliver high quality services, improve outcomes and support value for money. Because the commissioning and planning of services relies on the evidence base for a given type of SLCN or model of practice, it is essential that clinical and managerial expertise from speech and language therapists is available to support innovation and quality of service design.
Speech and Language Therapists, as part of the wider workforce, may be employed by a range of organisations, including the third sector, social care and education or be working as private practitioners.
Equal Access to services is of importance to local decision makers. Local demographic profiling will inform workforce requirements. For example, bilingual staff and support workers are required in most areas to meet the needs of diverse communities. The appropriate skill mix should enable services to be family-centred and be culturally and linguistically appropriate and responsive. It may be necessary to consider increasing home delivered services or providing services in unusual locations.
The RCSLT also acknowledges the important role that Assistants and Support Workers have in the delivery of effective speech and language therapy services. Assistants and Support Workers are integral members of both speech and language therapy and multi-disciplinary teams, engaged in a wide range of clinical settings with diverse client groups, duties and responsibilities. http://www.rcslt.org/aboutslts/rcslt_statement_v3.pdf
In order to support more effective use of skill mix, SLT services also need to provide education and training of the wider workforce and not be focussed solely on direct patient / client care. For all services, this is critical to secure the appropriate balance of
cost-effective universal, targeted and specialist services.
PRACTICAL CONSIDERATIONS
Many people involved in strategic planning, commissioning or reviewing services will not be familiar with speech and language therapy, its objectives, the needs of clients requiring speech and language therapy, the principles driving the profession, or the evidence base and the following points may support people.
Where possible, draw on the evidence base. Communicate clearly and succinctly.
Avoid using acronyms and provide a glossary of terms.
Do not assume knowledge of local arrangements or the requirement to interface with other agencies
Set your service in the context of local priorities.
The RCSLT’s Communicating Quality 3 (CQ3) provides clear guidance on care pathways, clinical standards and issues related to quality assurance. This information should be used in submissions to support commissioning quality services.
The following guiding principles have been adopted and apply to all client groups. Services are to:
Resource Manual for Commissioning and Planning Services for SLCN 10 be family centred and culturally and linguistically appropriate and responsive
be comprehensive, coordinated and team based
work with and communicate effectively with other services meeting the needs of the client
be evidence based ensure equal access
involve the family and carers
include training and education of co-workers
ensure practitioners continuing professional development and appropriate support. Evidence of the impact of the service will be important to commissioners and providers. Providers will need to demonstrate the impact of their service, particularly when services are being reviewed. Determining the objectives of the service will support the process of outcome measurement. SLT services will need to provide information on outcomes achieved and levels of client satisfaction. Some of this information can be gathered through use of the RCSLT’s Q-SET tool, as detailed above.
Managers of speech and language therapy services will need to equip themselves to engage effectively and positively with those who are commissioning or monitoring services. They will need to:
identify who is commissioning or responsible for overseeing different services. For example, health commissioners may be working with commissioners for
education/head teachers. It is important to identify who is taking the lead for each aspect of the service delivery in the locality.
establish good working relationships and effective communication with those commissioners and planners for their area of responsibility.
be aware of local priorities and commissioning plans and strategies.
have a good understanding of the commissioning/planning/monitoring framework for the locality
be equipped with local data, knowledge and evidence to the tendering process be clear of the unique contribution of the service to improving health, employment,
education and social outcomes
be able to clarify and demonstrate local working partnerships and collaborations provide data describing the service provided, (numbers and types of patients, numbers
of attendances, health and social outcomes etc).
The RCSLT has developed a range of resources to support its members with Continuing Professional Development. CPD is a regulatory requirement for all SLTs and this requires all HPC Registrants to demonstrate how the CPD they have undertaken has sought to enhance service delivery and to be of benefit to service users. The RCSLT has endorsed this requirement through its own CPD standards. http://www.rcslt.org/cpd/resources
THE EVIDENCE BASE
The commissioning and planning of services must be informed by the evidence base of effective practices.
This Resource Manual SLCN is based on a synthesis of existing published research. The threshold for inclusion in the syntheses has favoured the most scientifically robust
research methodologies which have often reflected medical (impairment) rather than social (participative) models of care.
In the section summaries, emerging practices that have not been included in the evidence synthesis, are referred to and should be considered alongside the syntheses. This tension between empirical evidence resulting from robust research, which by definition is
retrospective, and the needs to encourage innovation and service re-design to support improvements in outcomes for people with speech, language, communication and swallowing difficulties is natural and unavoidable. Emerging practice will not have the same evidence base and therefore less empirically stringent measures of evidence need to be taken into account for these areas including professional consensus and measures of service user, parent or carer experience. However, because of the value of some emerging innovative practice, they have been included in this resource.
An overview of the methodologies employed in identifying practices that are included in this resource accompanies this document.
Using these resources
Speech and language therapy managers can assist commissioners by understanding their agenda and the objectives that they are to be assessed on.
The Royal College of Speech and Language Therapists is providing these resources to assist speech and language therapists in gathering the core data required to support service tendering agreements, service planning, monitoring arrangements and/or where services require specification.
Each part of these resources is focused on a specific area. The resources provide:
The Contextual Synthesis. This includes definitions, information on the incidence and prevalence of the disorder, key contribution of speech and language therapists, consideration of the implications and broader consequences of the disorder. The Synthesis of Key Literature. This summarises the evidence of the impact of
speech and language therapy.
Each section within these resources gives succinct information to inform the factual content for any service planning activity. These include:
Key points
Topic –What is [the condition]?
Resource Manual for Commissioning and Planning Services for SLCN 12 What causes [the condition]?
How does this condition affect individuals?
What are the aims/objectives of speech and Language therapy interventions for [this condition]?
What is the management for people with [this condition]?
What is the evidence for Speech and language therapy interventions in [this condition]?
Studies
Assessment methods
Speech and language therapy interventions Summary
References
This information will need to be put into context, using local information. Other guidance and resource materials
It is recognised that service managers may wish to amplify or clarify, an aspect of their service by providing reference to other national or local research of relevance.
The RCSLT has a range of resources which can be used to further support and inform the commissioning, planning and provision of services for people with speech, language, communication and swallowing needs. These can be found on the RCSLT website: www.rcslt.org
The RCSLT is grateful to the experts from within the SLT community who contributed to the evidence published in this document.
METHODOLOGY FOR SYNTHESIS OF LITERATURE Introduction
The focus of the interventional synthesis within these briefings is to provide a synopsis on the effectiveness of speech and language therapy interventions for each specific condition. The interventional syntheses are produced by reviewers within the Information Resources Section (within the Health Economic and Decision Science Section) at the School of Health and Related Research (ScHARR). Information specialists/reviewers for this bulletin were Diana Papaioannou and Anna Cantrell.
Methodology
The interventional syntheses are not intended to be a full systematic review within each topic area. However, they draw upon systematic review techniques to ensure that the syntheses are developed according to systematic, explicit and transparent methods. The intention of the syntheses is to consolidate twenty articles which represent some of the best research for each topic area.
Literature searching
Systematic literature searches were undertaken to identify a range of evidence for each interventional synthesis. The interventional syntheses do not attempt to consolidate all research within a particular topic area; rather they aim to present a careful selection of the most current research within that field. Therefore, the approach adopted for the literature search aims to be comprehensive reflecting this systematic and explicit approach.
Firstly, search terms were selected within the project team drawing on the expertise of four speech language professionals. This involved listing all possible synonyms describing the condition or population (for e.g. children/infant, stuttering/stammering) and combining those with terms to describe speech and language therapy. Terms were used in both free text and thesaurus searching. The following databases were used:
ASSIA CINAHL
The Cochrane Library (which includes the Cochrane Database of Systematic Reviews, Cochrane Central Register of Controlled trials, Database of Abstracts of Reviews of Effects, Health Technology Assessment Database and NHS Economic Evaluations Database).
Linguistics and Language Behaviour Abstracts MEDLINE
PsycInfo
All references retrieved from the literature searches were entered onto a Reference Manager Version 11 database using appropriate keywords.
Resource Manual for Commissioning and Planning Services for SLCN 14
Selecting and obtaining relevant articles
Articles for inclusion were selected to illustrate the range of good quality evidence within each topic area. An initial screening of articles was undertaken by the Information specialists/reviewers who adopted the following principles:
Articles must be empirical research evaluating the effectiveness of a particular speech and language therapy intervention
Only articles published in English language are included.
In general, only the most current (1998-present) literature is included. However, exceptions were made to this if a particular article was felt to be important to include. Where possible higher level evidence was included (systematic reviews, randomised
controlled trials). However, this research did not always exist in every topic area. Efforts were also made to seek out literature that provided a range of perspectives on
interventions for each topic area, i.e. both quantitative and qualitative research. Following initial screening, the remaining articles were examined by two members of the team; each having considerable speech and language therapy knowledge and experience. Approximately, twenty articles were selected by the two reviewers with disagreements being resolved by a third reviewer.
Assessing the quality of relevant articles
Formal quality assessment of the articles was not undertaken. Instead, quality assessment involved using checklists as a guide to give an indication of the overall quality of studies and highlight the main good and bad aspects of each study. For each interventional synthesis, the included study designs are listed and the problems with each study design noted. General observations on study quality are made and common errors within the studies, where appropriate, are specifically noted. The checklists used are one for quantitative and one for qualitative studies from the Alberta Heritage Foundation for Medical Research.1 Additionally, when an identifiable study design was used, the appropriate Critical Appraisal Skills Programme (CASP) checklist was selected.2
Syntheses of the twenty articles
Each article was read in turn by one of the Information Specialists/reviewers. The key points were summarised including the objective of the study, the participants’
characteristics, the methodology, the intervention, results and limitations. From this, articles were grouped into themes according to the factor being investigated (for e.g., length of intervention, personnel carrying out intervention, family involvement in treatment, nature of disorder). Results were summarised and drawn together within each particular theme and a summary paragraph provided at the end.
These syntheses first went out for review by selected individuals, identified by the research team, with particular expertise in the delivery or management of services to the
1
LM Kmet, RC Lee, LS Cook (2004) Standard Quality Assessment Criteria for Evaluating Primary Research Papers from a Variety of Fields. Accessed at http://www.ihe.ca/documents/hta/HTA-FR13.pdf (Accessed on 25th September 2008, now no longer available)
2
Critical Appraisal Skills Programme (2007) Appraisal Tools. Accessed at
specific client group. Comments were included in the second draft, which was then dispatched to those selected by the Royal College Speech and Language Therapists who were invited to attend a focus group day. These therapists gave detailed consideration to their specialist area and contributed to the more general discussion of one further area. Issues to be captured in the key points were also identified within the focus groups. These comments contributed to the third draft of the syntheses, which again went out to
reviewers. In some cases, further work was required in order to modify the wording and reflect discussion.
Checklist for service managers involved in commissioning services
Have you presented incidence and prevalence figures and local demographic trends for the conditions in your area?
Have you provided information on local access and use of services in the context of the number expected and highlighted your approaches to inequalities?
Have you consulted systematically with users to inform development of this commissioning proposal?
Does your proposal fit/link with local cross agency priorities? Have you outlined the range of services provided including training?
Have you made clear how this fits with future planning for your service over the next 3-5 years? Have you stated the assumptions which underpin your thinking in the plan and for future developments?
Have you offered predictions about the likely impact of investment in the proposal?
Have you made clear where the risks are and what contingency plans you have put in place?
Professor Pam Enderby Dr Caroline Pickstone Dr Alex John
Kate Fryer Anna Cantrell Diana Papaioannou
RCSLT RESOURCE
MANUAL FOR
COMMISSIONING AND
PLANNING SERVICES FOR
SLCN
RCSLT Project
Topic – Acquired Brain Injury Synthesis
1.
Key Points on Brain Injury1. SLTs have a unique contribution to play in the differential diagnosis of communication and swallowing problems following an acquired brain injury, in differentiating the individual’s residual and emerging abilities, including those factors that can act as facilitators and barriers to recovery in these areas.
2. SLTs assess clients at an early stage following their brain injury using informal and formal assessments in order to identify the breadth of communication interactions available to promote functional communication at each stage of rehabilitation.
3. SLTs work with relatives and care staff to gain a better understanding of the communication problems and also assist in promoting interaction.
4. SLTs work with individuals with acquired brain injury to provide long term intervention and monitoring, particularly at key transition stages.
5. The presence of cognitive - communication difficulties leads to vulnerability and increased problems in social participation.
6. It has been shown that paediatric Brain Injury often does not resolve completely and difficulties can persist or emerge which may have an impact upon education and social integration later in life.
7. Researchers suggest better outcomes if speech and language therapy management is individual, family centred, relevant to real life, addresses insight and awareness allows generalisation and is context specific.
8. It is suggested that early intervention by the speech and language therapist provides a cost-benefit for future functioning.
9. Speech and language therapists provide assessment to determine competence / mental capacity as well as advocacy for the criminal justice system.
2.
What is a Brain Injury?An Acquired Brain Injury (ABI) is defined as ‘any trauma to the head which disrupts the function of the brain’ (NICE 2007). The ABI may involve the scalp, the skull, the brain or its protective
membranes. This synthesis will address the speech , language, communication and swallowing difficulties resulting from an acquired Brain Injury’ (ABI) including brain injury associated with hypoxia or brain infections such as encephalitis.
Traumatic brain injury (TBI) results from an outside force, and subsequent complications which can follow and further damage the brain. These include a lack of oxygen, rising pressure, and swelling within the brain. Brain injuries resulting from a TBI can be diverse and occur both over a wide area of the brain and/or in a small focal area. For example, damage to parietal lobes results in physiological weakness on the opposite side of the body, damage to the left temporal lobes or to the brain stem results in speech and language impairment, while damage to the frontal lobes results in cognitive impairment affecting judgement, emotions, memory, insight and behaviour. Therefore, the symptoms may include, to varying degrees, disruption in functioning of the
physiological functions, language, cognition, emotions and behaviour. The severity of the ABI can be categorised as minor, moderate, or severe, or with the patient being in a coma or vegetative state. ABI results in problems with arousal, consciousness, awareness, alertness, and
responsiveness. These can result in different states of abnormal consciousness, specifically; stupor, coma, persistent vegetative state, locked-in syndrome, and brain death (NINDS 2002). Each individual’s Brain Injury is unique and consequently the individual will experience differing symptoms and severity.
RCSLT RESOURCE MANUAL FOR COMMISSIONING AND PLANNING SERVICES FOR SLCN Brain Injury
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3. How many people have a Brain Injury?
Risk factors for sustaining a TBI are related to gender, age and activity. TBI is more common in males than females. TBI is most prevalent in children and young adults, particularly in the under 5s and 15-24 year olds. Infants and young children are at risk of TBI from shaking, falls and knocks, road traffic accidents, as well as from trauma from violence (NINDS 2002). Brain injury occurs frequently in those undertaking sporting activities. For example, skateboarding, roller-skating and cycling and those who follow adventurous activities or are in the military (Ackery et al 2007, Kraus 1986, Lui et al 2008, Lee et al 2010, Crocker et al 2010 Brainline 2008). Conversely, those who are frail, such as the elderly, particularly those over 75 years old, are prone to falls and knocks that can result in TBIs occurring (NINDS 2002). Road traffic accidents are a cause of TBI across all age groups.
Table 1: Incidence and Prevalence of TBI
Incidence Prevalence Gender Country
280/100,000 children (Hawley et al 2002)
UK
300/100,000 (BSRM 1998) UK
186,000 per year (Headway 2009)
70-88% are
male (NICE 2007)
UK TBI Highest risk in 0-4 year
olds and 15-19 year olds (Brainline 2008)
1.5 male to female (Brainline 2008)
USA Estimated 1.4 million people
sustain a TBI each year in USA (Langlois et al 2006)
TBI resulting in death is most prevalent in 15-24 and 25-34 age groups (Langlois et al 2006) 1.4 male to female (Faul et al. 2010) USA 6.33/100,000 snowboarders 1.03/100,000 skiers (Ackery et al 2007) 63% male TBI snowboarders 51% male TBI skiers (Ackery 2007) World study
4. What causes Brain Injury?
TBI results from an outside force, such as a severe blow or jolt to the head. This may be caused by a sharp or blunt instrument and may cause focal or diffuse damage to the cortex or white matter of the brain (Hortobágyi & Al-Sarraj 2007). BI may be closed, where the skull is not
broken, or open, where the skull is broken by a penetrating object, or the skull itself breaching the dura mater (see Table 2). For example, a study by Langlois (2004) reported the most common cause of TBI (USA) as falls (28%), road traffic accidents (20%), being struck on the head or the head striking another object (19%), and assaults (11%). Similar causes have been reported for UK (Headway 2009). Physical abuse is a leading cause of serious brain injury and death in children aged 2 years or younger, including shaken baby syndrome. Causes may encompass skull fractures, cerebral lacerations, cerebral contusions, shearing injuries, acute/chronic sub-dural haemorrhage, chronic sub-dural haemorrhage and intra-cerebral haemorrhage.
Acquired brain injuries are also associated with metabolic conditions and periods of anoxia or brain infections such as encephalitis. The viruses that commonly produce isolated or unrelated (sporadic) cases of viral encephalitis are:
• The herpes simplex virus (also causes cold sores) • The measles virus
• The varicella virus (chickenpox) • The rubella virus (German measles.
The encephalitis is thought to be due to virus tracking along the olfactory nerves from the nose to the brain. Herpes simplex encephalitis affects the temporal lobes and less commonly the frontal lobes of the brain. The temporal lobes are the areas that control memory and speech and the frontal lobes control emotion and behaviour.
Other causes of brain injury are associated with metabolic dysfunction, and tumours.
Note: brain injury associated with stroke, haemorrhage and cerebral tumours are covered in the synthesis in this series termed dysphasia
5. How does Brain Injury affect people?
The effect of brain injury varies with the extent and location of the brain damage. The impact may affect comprehension and expressive language, cognition, emotions, behaviour and physical abilities such as swallowing and speech and can be life-affecting (Baldwin et al 2006, Galski et al. 1998, Snow et al. 1998). The following are likely consequences of such impacts:
- Cognition: disruption in learning ability, attention, memory, speed of thought,
understanding, concentration, solving problems, executive function and using language. - Emotion and Behaviour: some changes may occur in emotional reaction and behaviour
which may be overt (for example mood swings, anger, depression, challenging behaviour, judgement) or covert (including ‘flat’ mood, lack of motivation, passive behaviour, lack of initiation, lack of drive, loss of insight).
- Physical: damage to areas of the brain responsible for motor abilities can result in problems of movement, praxis, motor control and coordination which can affect voice, fluency, speech and swallowing liquids and solids. (Beukelman & Yorkston 1991, Murdoch & Theodoros 2001, McDonald et al 1999).
The overall impact of BI can range from a severe paralysis with accompanying major mental impairment to occasional behavioural disturbances, post-traumatic stress disorder, or epilepsy. However, even mild TBI can have serious long-term effects (Lowenstein 2009, Jensens 2009, Baldwin et al 2006). Return to work following brain injury has been noted as being problematic and there are reports of a higher than usual divorce rates and suicide rates of those following brain injury. Social communication skills one of the most pervasive features of BI and impacts on relationships, roles, education and employment (Dahlberg et al 2007). Those with severe BI have the most difficulty with social communication (McDonald et al 2008).
Ylvisaker & Gioia (1998) described six aspects of language and communication disruption that were caused by TBI:
Disorganised language or impaired discourse.
Inflexibility.
Concrete thinking.
Insufficient word retrieval.
Inefficient learning of new language.
Impaired social communication.
A wide range of swallowing problems can exists following a TBI relating to the area of damage (Logemann 2007). Additionally, difficulty with swallowing caused by TBI can be life-threatening. Aspiration of food, drink and saliva is frequently caused by oropharyngeal dysphagia and can lead
RCSLT RESOURCE MANUAL FOR COMMISSIONING AND PLANNING SERVICES FOR SLCN Brain Injury
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to aspiration pneumonia (Marks & Rainbow, 2001). Quality of life can be impaired with, for example, embarrassment or lack of enjoyment of food, with profound social consequences for the individual and their family. Note: See the synthesis in this series on dysphagia
Children have a certain plasticity to the brain and their abilities change as they develop.
However, TBI in children can affect the physiology of brain development. A study by Hawley et al (2004) found that while most children with mild TBI appeared to make a good functional recovery, residual difficulties can remain. These may include temper outbursts, mood swings, memory problems and learning and social difficulties. Even minor residual deficits can affect the child’s long term abilities, with sequelae interfering with school and social functioning. (Demellweek, Baldwin & Rankin 2006). The more severe the child’s TBI, the more that brain functioning is adversely affected. This can result in multiple difficulties in language abilities and
cognitive-communication skills, as language and cognition are interrelated; for example, language discourse abilities may be affected and consequently impact on social communication (Chapman et al 2001, Gore & Tyrer 2006).
Physical impairments that affect the motor control of the oral and speech musculature impacts on eating and swallowing, articulation and speech production, resulting in dysphagic and dysarthric disorders (Gore & Tyrer 2006). These difficulties affect not only the individual but their family and friends, as well as the provision required for their care and education. They may require long-term special education and support from health and social services.
In contrast with children, adults have already acquired their speech, language and communication skills. Consequently, the effects of TBI will differ. Depending on the severity of the TBI, cognitive-communication, physical and emotional behavioural abilities may all be affected to differing degrees. Cognitive difficulties can include deficits in attention and concentration, the ability to sustain a task or to process information, memory, communication, problem solving, perception and learning (Slomine & Locascio 2009). Executive functioning can be impaired, impacting on the ability to organise, plan, and to regulate behaviour. The degree of disruption to speech, language, social communication, eating and swallowing abilities is related to the extent of the TBI which can be confounded by the individual’s own reaction to the condition. Various environmental factors can influence the impact of TBI, for example, a study by Jacobsson et al (2010) reported that individuals who were married or in long term a relationship and in productive work had better outcomes post TBI.
Issues of patient safety related to both children and adults following brain injury are associated with difficulties of insight and awareness and higher risk-taking activities.
Table 3: ICF areas affected by Brain Injury ICF
Dimension
Areas affected by brain injury Impairment Cognition
Language skills
Auditory or reading comprehension Verbal or written expression
Dyspraxia Memory
Attention and concentration Speed of information processing Concrete thinking
Planning, organising and problem solving (executive functions) Visuospatial and perceptual difficulties
Self-awareness Executive functioning Insight
ICF Dimension
Areas affected by brain injury
Emotional and behavioural effects: Agitation
Explosive anger and irritability Lack of awareness and insight Impulsivity and disinhibition Emotional lability
Self-centredness
Apathy and poor motivation Depression
Anxiety
Inflexibility and obsessionality Sexual problems Motivation Physical effects: Dysarthria Dysphagia Dyspraxia
Muscle weakness or paralysis Ataxia
Movement, balance and co-ordination
Sensory Loss (including vision, hearing, taste and smell) Tiredness (fatigue)
Headaches
Bladder & bowel incontinence Hormonal changes
Epilepsy Activity Using language
Discourse skills
Using intelligible speech Communicating
Reading and writing Eating and drinking Solving problems Fatigue
Initiation of tasks
Loss of interest or inability to sustain a task Mobility
Reduced abilities from effects of medication Self-care
Slow reactions to or overload from information Repetition of a cycle of thoughts or actions Visual neglect
Insight and pragmatic understanding Disinhibition Challenging behaviour Participation Integration Loss of autonomy Reduced independence Restricted environment
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ICF Dimension
Areas affected by brain injury Problems establishing peer relationships
Social isolation
Social participation – dependency on others Reduced self-esteem
Anti-social to peers
Difficulty in long term relationships Well-being Depression
Frustration
Mood swings – emotional lability Anger
Loss of confidence Anxiety
Low self-esteem
6. What are the aims and objectives of Speech and Language Therapy for individuals with Brain Injury?
Aims and Objectives of Speech and Language Therapy for Children with Brain Injury SLT Intervention aims to facilitate recovery after brain injury and to help the child succeed in their environment, in the home, pre-school or school, and to enable them to participate in their
community.
SLTs have specific responsibility for assessment and therapeutic intervention with children who have acquired speech, language and communication disorders following BI. These include cognitive-communication difficulties which impact on social communication, social interaction, and education and learning abilities (Ylvisaker et al 2003, Paul-Brown & Ricker 2003, Dahlberg et al. 2007). SLTs also advise on assistive or alternative communication aid devices.
SLTs have specific responsibility for assessment and therapeutic intervention with children who have acquired eating andswallowing disorders.
SLTs aim to build capacity by training staff and carers in understanding the nature of the child’s difficulties, and advising on strategies which facilitate successful communication and
feeding/drinking (Crary & Groher, 2003, 2009, Rosenvinge et al 2005). .
SLTs recognise that there is a need to provide on-going long term monitoring of individuals. Speech and Language Therapy Services for Children with Brain Injury include:
Assessment of the infant/toddler/child's early communication interactions and pre-speech-language functioning and eating, drinking and swallowing.
Contribution to diagnosis.
Advise on the development of social communication skills.
Planning and provision of appropriate therapeutic interventions to promote communication and feeding. This includes providing individualised treatment intervention.
Advise on assistive or alternative communication aid devices.
Training of individuals and their families/carers in methods of promoting communication and where necessary using assistive or alternative communication aid devices
Working jointly with other members of the inter-professional team (educational & medical) to facilitate communication, and behaviour modification.
Advise on, demonstration and practice of the most effective way to engage the child in verbally mediated interventions and to minimise the effects of the communication disorder where possible.
Engendering a safe environment to enable the vulnerable brain injured child to maximise their potential.
Advise on strategies to reduce dependency on others and developing independence.
To provide ongoing review and intervention at points of transition in the child's development.
Aims and Objectives of Speech and Language Therapy for Adults with Brain Injury:
Assessment of the speech, language, communication, social interaction and swallowing and feeding abilities.
Contribution to diagnosis
Provision of individualised treatment interventions.
Planning appropriate therapeutic interventions to address the speech, language communication and swallowing impairments, and reducing activity and psychosocial restrictions.
Advising on assistive or alternative communication aid devices.
Training of individuals and their families/carers in methods of promoting communication and where necessary using assistive or alternative communication aid devices
Working jointly with others members of the inter-professional team (medical, social, voluntary bodies).
Educating and working with family members, carers and relevant staff to provide an understanding of the nature of the difficulties and strategies to optimise function and independence.
Training relevant people to work with the individual and provide support to them over a long period of time.
Advising, demonstrating, practising and providing strategies on the most effective way to engage the individual in verbally and communication mediated interventions and to minimise the effects of the communication disorder where possible.
Reducing the barriers to interaction to individuals and their social environment.
Approaches to rehabilitation following brain injury includes, as appropriate, work on three areas relating to the restoration of function relating to speech, language and swallowing. Specific intervention for cognitive problems includes specific work on linguistic deficits, compensatory strategies and behavioural techniques (Murdoch & Whelan 2007).
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Table 4: International Classification of Functioning (ICF) dimension: SLT Aims of intervention in Brain injury
ICF dimension
Techniques to maintain and improve Impairment Language skills
Cognitive skills Attention skills Memory skills Sensory skills Speech skills
Motor control of eating, drinking and swallowing musculature General motor skills
Vocal tract function Respiratory status Tracheostomy status Level of alertness Effect of medication Structure Oral hygiene Oral sensitivity Dental health
Activity Ability to understand and express Ability to communicate
Ability to take turns
Ability to provide a narrative Ability to negotiate
Ability to shape behaviour, appropriate to social setting Ability to use augmentative communication
Ability to enjoy talking in different settings Ability to control behaviour
Ability to regulate appropriate communicative intent. Ability to sustain attention
Ability to engage Ability to eat safely
Ability to enjoy eating and swallowing food Learn other methods of communicating Help the person to use remaining abilities.
Help the person compensate for language problems.
Help to restore language abilities as much as possible by developing strategies.
Participation Social integration – reduce social isolation
Social participation - develop ability to behave appropriately in social settings, interact and participate with peers
Control of challenging behaviour Self-esteem as a communicator Help to access the curriculum Help to access work
Accessing education settings Accessing work settings.
Well-being Advise on strategies to reduce anxiety, frustration and upset Advise on situational awareness to reduce stressors
7. What is the management for individuals with Brain Injury?
The heterogeneity of BI is such that there is a need for overlapping management relevant to the needs relating to cognition, physical and behavioural problems.
The SLT will be working as part of multidisciplinary team which includes specialists from health, education, social and voluntary organisations and the family members and others in the
individual’s communication environment. The management process will include direct and indirect interventions. These will have time implications for the education and training that SLTs will provide to other professionals and family members, taking on team roles, and attending meetings and the planning and delivery of care.
SLT should be viewed as an integral member of a team providing: specialised rehabilitation for those with brain injury within the hospital and in the community. Speech and language therapists should be available to support long term needs of individuals and their carers; and at transition points, such as school entry, social opportunities and return to education or work. Family support and training is an important factor in rehabilitation (Braga et al 2006), SLTs can support families during the rehabilitation process. Paid carers have been used to good effect (Behn et al. 2010) Assessment
Initial assessment, both informal and formal, is made in the acute phase for individuals with a BI, and when symptoms become apparent. The SLT having assessed the individual’s communication strengths and weaknesses in a number of settings will establish a baseline from which to measure change and outcomes. Assessment needs to holistic in nature given the global impact of head injury on functioning and performance in life skills. Assessment will include the following areas.
Identifying the most effective way to communicate with the individual and to facilitate the work of others involved in care to ensure they are aware of the communication difficulties and understand the best way to communicate with the individual.
As there is no one assessment appropriate for patients with brain injury the SLT will identify the most appropriate tools for assessment according to their apparent difficulties and stage of recovery following taking a case history and a period of observation. Multiple measures are needed to identify which aspects of language are affected and which abilities remain, difficulties may involve comprehension and expression, deficits in verbal and written language, pragmatic and contextual language use, discourse and organisation of language, with limited content and vocabulary or word finding difficulties and loss of fluency of speech.
The SLT will identify the ability to communicate functionally in the communication environment, and those aspects of life/role impeded by communication or swallowing deficit; and will contribute to addressing these issues.
Assessment will include the identification of motor planning difficulties, dyspraxia affecting the ability to produce speech, and dysarthria, affecting the ability to articulate intelligible speech. - See dysarthria synthesis
In the acute stages the SLT will assess eating, drinking and swallowing ability to ensure safety and adequate nutrition. Assessment of the oral and pharyngeal musculature for control of bolus and safe swallow may include a request for videofluoroscopy. SLT involvement in assessment may be long-term if the individual has long-term ventilation or complex tracheostomy needs. – See dysphagia synthesis.
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Post brain injury recovery is dynamic and the injury has long term affects the individual may require long-term monitoring and review which may lead to further intervention and treatment particularly at points in transition for example when re-entering employment or education.
In delivering care, the SLT needs to identify the individual’s, and their family’s preferences and priorities for rehabilitation, and to establish both short and long term goals. They will need to establish the individual’s mental and emotional state through formal and informal assessment, and to establish their readiness to engage in therapy. The SLT intervention may be individual and or group work and will usually involve working in partnership with relevant family, carers and involved professionals. Strategies may involve identifying goals and end-points which meet the individual and their family’s wants and needs, identifying projects which motivate and engage the individual and which are functionally relevant, utilise planning and organisational skills and are of finite duration. Training communicative partner has positive effects (Togher et al. 2010). The SLT may be involved with communication training for paid care givers as has been shown to be effective in improving the conversational interactions (Behn et al., 2010).
Of particular concern are the issues to do with reduced insight and awareness which can have serious consequences related to patient safety. Interventions using real-life contacts for the individual and their family have been found to be time-consuming but effective in increasing ability and generalisation of skills (see literature synthesis). Individuals can respond to specialist
rehabilitation and continue to make progress years after the BI occurred. Worthington et al. (2006) reported the cost-effectiveness of specialist intervention, particularly in the areas of activity and participation.
Many people with dysphagia associated with cognitive problems may be unaware that they have a swallowing problem, thus carers have to take responsibility for following the recommendations of the SLT. Educating carers involved in the care of patients with dysphagia is essential in ensuring compliance with safety recommendations. If there is insufficient information or provision of appropriate supervision, then there tends to be less compliance with safe swallowing strategies. Studies indicate that the advice and guidance given by SLTs enhance adherence to swallowing regimes (Rosenvinge & Starke 2005). (See dysphagia synthesis). Additionally where individuals have been on non-oral feeding for a while, there may be associated fears and phobias which need to be addressed if reintroduction of oral feeding is to be successful.
The speech, language and communication difficulties and problems of social interaction encountered in childhood and resulting from TBI can continue into adulthood and vulnerable individuals need care and support to cope in society. Work on developing social communication through communication partners can have a positive outcome, though this is related to the severity of the communication problem (Galski 1998, Dahlberg et al 1998, McDonald 2008). Table 5: International Classification of Functioning: SLT in Brain Injury management ICF Therapy
Impairment Targeting specific processes.
Maximizing potential of brain plasticity.
Retraining functions to access language areas of brain. Neurolinguistic programming.
Training oral bolus and fluid control. Training safe swallow
Activity Facilitate functional communication strategies. Promote relevant planning and organisational skills.
Teaching the individual compensatory strategies to facilitate communication. Introducing alternative methods of communication where appropriate, such as,
ICF Therapy
gesture, drawing and symbols, or computers and other technology. Developing social scripts and social use of language
Work with communication partners to maximize effectiveness, facilitate decision-making and promote opportunities for communication.
Ensure nutrition and hydration. Management of secretions. Identify dietary preferences. Establish a feeding pattern.
Advice on posture and positioning. Advice on bolus size.
Advice on altered food consistencies.
Advice on pacing and presentation of food and drink Advice on special utensils
Coping strategies
Participation Treatment and techniques to support the individual and their significant others to achieve short and long term goals.
Assisting with lifestyle and identity changes.
Facilitate access to employment, education, goods and services where appropriate, including signposting to local community and voluntary organisations.
Accessing and adapting environment. Ability to participate in social meal times. Ability to eat in different locations. Cope in differing social settings.
Rehearsing and applying social use of language
Well being Providing full and appropriate information to individual and their family. Providing support during an adjustment period.
Referring for counselling or other emotional support if necessary. Monitoring the emotional state, mood and behaviour and signpost to appropriate support, such as, counselling.
Support the ability to express emotions e.g. through AAC.
Cognitive-Communication Intervention (CCI) has proved to be a useful strategy in SLT intervention particularly in the areas of social communication, behavioural regulation, verbal formulation, attention, external memory aids, executive functions and communication partner training (MacDonald & Wiseman-Hakes 2010). Further research is needed to assess the effectiveness of CCI in comprehension (both auditory and reading), written expression and interventions for vocational communication.
The skill level of the SLT working with people with acquired language, dyspraxia, and/or cognitive-communication problems resulting from TBI needs to be at a specialist level or under specialist supervision. The skill level of SLTs working with dysphagia must be commensurate with the job requirements of postgraduate training and clinical expertise as specified by the RCSLT for such specialist posts because of the complexity of the assessment, diagnosis and management of dysphagia.
Table 6: SLT as a member of different teams may include the following
Age Group Teams
0 to 2 years 3 to 4years 5 to 18 years
Family/carers, Health Visitor and Health Team and the specialist doctors including paediatricians, neurologists, orthopaedic surgeons,
psychiatrists and other members of the Child and Adolescent Mental Health Services (CAMHs) team, nurses, orthodontic surgeons, clinical and educational psychologists, occupational & physical therapists,
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Age Group Teams
audiologists, music therapists, play therapists, leisure and activities co-ordinator, hospital play specialists, nursery staff, teachers, dietician, radiographer, social workers in the social services team, voluntary and independent sectors, local authority.
19 year upwards Holistic care involves a wide range of statutory organisations, specialist support services within organisations and social groups such as –
Family & Carers
Carer & Parenting supports
Higher Education providers
Joint Learning Disability Teams
Specialist dedicated services
Social Services teams
Local Authority – use of specialist residential education
Specialist employment services
Voluntary and independent sectors
Police and probation services
Criminal justice system
Forensic and secure services
Employers and business/commerce
Ethnic and faith groups
Relationship guidance
An holistic approach to SLT care will involve many strategies. In addition to focussing on impairment and activity interventions, communication strategies need to be applied to everyday life. Examples of specific strategies include the use of ‘Functional Communication Biographies’ (FCB) to aid communication with others, and the ‘Person Centred Planning’ (PCP) with the aim of bringing choice and control for the individual in their daily life (Mount et al 2003, 2003). The team may utilise such tools as Planning Alternative Tomorrows (PAT) and Hope (PATH), Making Action Planning (MAP) and ‘Circle of Friends’, where the individual’s aspirations are identified and action taken to best meet their needs by working across all health, education and social boundaries (Pearpoint et al 1993, Forest et al 1992). Bellon & Rees (2006) highlighted the need to have a sustained support network to provide structure for communicating in context, as ability to use language is effected by different environments. SLTs can identify which communication environments impact on language skills and plan support.
SLTs are involved with the communication aspects of vocational rehabilitation which aims to promote enabling individuals to undertake education and work and to sustain that employment. The recovery pattern in BI is such that intervention will be needed at different points across the life-span. SLTs will be involved long-term and in facilitating transition points. Individuals who may be coping at one time can require intermittent intervention. Their needs can change over time, they age or if circumstances or environment change (Olver 1996).
Augmented and Alternative Communication
Augmentative and Alternative Communication (AAC) refers to any system of communication that is used to supplement or replace speech, to help people with oral communication impairments to communicate. This can range from ‘low tech’ aids such as drawing and writing, or communication books, to ‘tech’ aids such as computerised voice output communication aids.
The objective of introducing AAC is to maximise communicative function in the areas of life that are seen as a priority by the individual and their family (Clarke et al 2001). The AAC use and needs will be continually reviewed to ensure that changing usage and needs are met. AAC
assessment will aim to:
identify participation and communication needs.
assess capabilities in order to determine appropriate options
assess external constraints.
develop strategies for evaluating the success of interventions. (Beukelman & Mirenda 1998).
Individuals who may benefit from communication aids should have access to an AAC specialist or team, who are skilled in assessment, planning, intervention and review in this area.
Cultural diversity
Individuals and their families who may have English as a second language should have support to help to access relevant services. An interpreter may be required to assist with conducting the SLT assessment to ensure it is both accurate and reliable and to facilitate understanding of therapy and implementation of treatment strategies. There are both time and cost implications when working with interpreters/co-workers, for example in taking a case story and completing a full assessment in all languages spoken by the individual and their family. SLTs working with people with a TBI need to be aware of cultural and religious factors which may impact on ability to access services, including timings of religious services and avoiding appointment times which coincide with religious observances (Communicating Quality 3 2006).
8. What is the evidence for SLT interventions?
Evidence on SLT interventions for traumatic brain injury Details of studies
Seventeen studies published in twenty papers were included in the assessment of SLT interventions for traumatic brain injury. The scope of research questions was wide ranging reflecting the diverse range of sequelae associated with traumatic brain injuries and the contribution of SLT in both functional and cognitive aspects of rehabilitation.
All seventeen studies were published in English. Twelve studies were undertaken in the USA, three in Australia, one in Ireland and one in Scotland. The earliest study was published in 1999 and the most recent in 2009. Sample sizes, not including review studies, ranged from twelve to 491 study participants. Thirteen studies included adult populations, three studies included children and one review included studies with adult or child populations.
Twelve studies included TBI participants only, one study population included both TBI and stroke participants but specified the proportion of participants with TBI. The remaining studies, which were all reviews, included studies of participants with acquired brain injuries or non-progressive brain injuries including TBI. Overall reviews specified the cause of brain injury when discussing individual studies.
Nine studies reported details of injury severity. In four of these injuries were described as
moderate to severe, three were described as severe, one was described as mild to moderate and one described injuries as predominantly severe but also included a proportion of participants with mild injuries. Ten studies reported the time since injury was sustained. In eight studies participants were described as being in a chronic or post acute stage of recovery. In the remaining two
participants were in the acute stage of injury. Study quality
Study designs included four randomised controlled trials (RCTs), two non-randomised
comparative studies, five observational studies including one large prospective case series, five systematic reviews and one non-systematic review. Overall methodological quality was mixed.
