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GUIDELINES FOR MEETING AUDIOLOGICAL NEEDS OF ADULTS

WITH LEARNING DISABILITIES

Version Number:FINAL DRAFT : 03 November 2009

Prepared By:Sub Group on Learning Disabilities [Audiology Services Advisory Group]

Effective From:01/12/2009 (Date of Release )

Review Date:To be agreed

Dissemination Arrangements:

Warning – Document uncontrolled when printed

Guidelines for Meeting Audiological Needs of Adults with Learning Disabilities

Contents

Page Number

Executive Summary 1-9Group membership 1

Concept of disability and learning disabilities 1-3Aims 3Objectives 4Method 4Issues 4Consultation 5Recommendations 5-9

Research, audit & evaluation 5Awareness raising 5Identification 6Referral pathways 7Management 7-8Rehabilitation 8-9

Section 1 : Introduction 10-15Policy content 12

Concept of disability and learning disabilities 12-14Consequences of hearing impairment in people with learning disabilities 14-15

Section 2 : Awareness Raising 16-20Methods to raise awareness 17-18

Development of competencies in NHS services and carers 18-19Recommendations 19-20Resource implications 20

Section 3 : Identification 21-26Recommendations 25

Resource implications in relation to identification 26

Section 4 : Referral Pathways 27-30Criteria for the direct referral of adults with learning disabilities to audiology services 27-28Guidelines and advice for audiology services 28Audiology protocol for the hearing assessment of adults with learning disability 28-29Recommendations 30


Resource implications 30


Page Number

Section 5 : Management 31-32Recommendations 31-32

Resource implications 32

Section 6 : Rehabilitation 33-37Deaf awareness trainer 34

Speech and language therapist 34Community learning disability team 34Social worker for the deaf 35Hearing therapist 35Lip-reading teaching 35Sign language teaching 35Support groups 35Audiology 35-36Auditory development programme 36Recommendations 36-37Resource implications 37

Section 7 : Conclusions 38

Section 8 : Recommendations 39-43Research, audit & evaluation 39

Awareness raising 39-40Identification 40-41Referral pathways 41Management 41-42Rehabilitation 42-43

Appendices 44-64(A) Sounds Great?: A consultation with people with

learning disabilities on making audiology services better 45-58

(B) Competency framework 59-64A.1 What is disability? 59-61A.2 Effect of disability 61-62A.3 Communication 62A.4 Visually impaired 63A.5 Challenging behaviour 63A.6 Safety 64A.7 Specialist care 64

(C) Referral pathways 65-82


Page Number(D) Examples of good practice

Personal communication passports NHS Ayrshire & Arran personal health records Bridge to Vision Lothian special interest group

83-848383

83-8484

(E) List of sub group membership 85(F) Glossary of terms 86-87(G) References 88-90


Executive SummaryThe purpose of this paper is to provide guidelines that will enable service providers to respond appropriately to the audiological needs of people with learning disabilities. It recognises that a significant number of those with audiological needs will also have a visual impairment, which will have an impact on methods used for diagnosis, assessment and management. The paper has been developed by a multi-disciplinary and multi-agency group, with membership drawn from across Scotland.

This guidance will cover:

Information on the target population The settings where the target population can typically be found The needs of the target group The professional groups and services that need to be targeted Referral pathways.

Group membership

The group was set up as a sub group of the Audiology Services Advisory Group to address the specific audiological needs of people with learning disabilities.

Representatives from a range of disciplines attended group meetings. This included: Audiology (Managers) Audio Vestibular Medicine Clinical Psychology Educational Audiology General Practice (GP) Hearing Therapy Paediatrics Public Health (including health promotion) Royal National Institute of the Blind (RNIB) The Royal National Institute for Deaf People (RNID) Scottish Council on Deafness (SCoD) Social Work Speech Therapy

Concept of disability and learning disabilities

Definitions

Definitions of the key terms are given here to ensure that everyone reading this document has the same shared understanding.

1

Executive Summary

Audiology

The study of hearing and balance and the diagnosis, alleviation and prevention of hearing and balance impairment.

Learning Disabilities

A person with Learning Disabilities (LD) has a significant life long experience that has three components:

Reduced ability to understand new or complex information or to learn new skills (in global rather than specific areas)

Reduced ability to cope independently Onset before adulthood (before age 18) with a lasting effect on the

individual’s development1.

In addition to this, the classification used by the World Health Organisation suggests that the person would have an assessed IQ falling below 70 (ICD 10; 1992) with additional functional deficits. Approximately 3.4% of the population are thought to have learning disabilities. Approximately 0.38% are thought to have severe or profound learning disabilities2.

Learning Difficulties

The term ‘learning difficulties’ refers to a condition where people require additional support with learning. The majority of children with a learning difficulty do not have an identified diagnosis but some will have, which includes those with autistic spectrum disorder (ASD) and those with Attention Deficit Hyperactivity Disorder (ADHD). Many of those who have difficulties learning do not have associated learning disabilities as defined above. Approximately 10% of the general population are thought to have learning difficulties.

Learning difficulties within children and young people means a learning impairment which has a substantial and adverse effect on their ability to carry out day-to-day activities. This will typically lead to additional support being required, either within mainstream education or within different education provision to that made generally by an education authority for children and young people within mainstream schools.

Autistic Spectrum Disorder (ASD)

This is a pervasive developmental disorder characterised by a triad of impairments manifested before the age of three, those being:

impaired social interaction

1 Scottish Executive (2001) The Same as You? A review of services for people with learning disabilities

2 NHS Health Scotland (2004) Health Needs Assessment Report : People with Learning Disabilities in Scotland

2

Executive Summary

qualitative impairments in communication restricted, repetitive and stereotyped patterns of behaviour.

Learning disabilities may or may not be present.

3

Executive Summary

Disability, handicap and impairment

The terms disability, handicap and impairment are often used inconsistently and interchangeably. This is particularly true when comparing terminology between child and adult services. For the purposes of this paper:

disability refers to a physical, physiological, mental or sensory abnormality, whereas

handicap refers to the consequences caused by the disability. A handicap is the degree to which the disability impedes, limits or restricts an individual’s participation in activities for which normal body function is needed.

The World Health Organisation (1980)3 defines impairment as any loss or abnormality of psychological, physiological or anatomic structure or function. The degree to which this poses a handicap is a function of the extent and degree of the disability. Hearing loss, for instance, causes activity limitations (disability) and social/occupational participation restriction (handicap).

People with learning disabilities are not a homogenous group. The presence of other disabilities in the same individual tends to magnify the primary disability. Developmental disabilities do not usually occur in isolation. In many cases, disabilities may be present in the same individual but in varying degrees. Others may have autistic spectrum disorder with hearing loss. The presence of an undiagnosed hearing loss is likely to make the learning disabilities or difficulties appear worse than they actually are. In addition, undiagnosed hearing loss may lead to challenging behaviours and other types of psychological distress that could be ameliorated if the hearing loss is diagnosed and treated. Denmark (1994)4 highlighted that deaf people within the general population were more likely to be referred with disturbance of behaviour than other types of mental health issues.

Hearing loss is an invisible disability that affects people of any age group, from neonates to older adults.

People with learning disabilities will already have communication limitations, compromising their education, social functioning and safety. This may be compounded if there is a concurrent hearing loss.

Aims

The aims and objectives of the group were:

a) To identify the audiological needs of people with learning disabilities and the resources required to address those needs

b) To reduce inequalities in healthc) To reduce inequity in service provision.

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Executive Summary

Objectives

a) To define the population groups for whom services need to respondb) To outline the needs of these groups in relation to audiological and other

requirementsc) To propose solutions as to how their needs can be appropriately metd) To highlight and scope any resource implicationse) To highlight development needs for servicesf) To identify and produce guidelinesg) To identify and produce recommendations.

Method

The group met on 12 occasions between September 2004 and August 2008. The key steps adopted in the production of the guidelines included:

Scoping and agreeing purpose, aims, objectives Developing an action plan Defining the population groups for whom services need to respond Defining the settings where the target groups live, work, spend their leisure

time and seek help Undertaking a literature review and gathering information on best practice,

including information on health inequalities Assessing requirements of policy documents Considering issues in using the tiered approach Assessing information on the needs of the target group using the

experience of group members and any published literature Drafting the guidelines Implementing a consultation exercise prior to redrafting and presentation.

Issues

A major constraint in undertaking the development of guidelines for meeting audiological needs of adults with learning disabilities, was the lack of evidence of effective interventions for the target groups considered. In addition, there is a lack of clarity and consistency in definitions used to describe disability and impairment. Due to a lack of robust research it is clear that interventions, until relatively recently, have been ad hoc, with very few studies in the literature providing robust evidence on which to base the guidelines. The result of this was that the group had to rely on grey literature to find approaches that were currently being implemented and appeared successful. Where the group found evidence of current or recent implementation of practice, the group has drawn on this and acknowledges it in the guidelines. A key recommendation therefore is that research should be urgently undertaken. This will be discussed more fully in the section on recommendations.

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Executive Summary

Consultation

A variety of consultation methods were used:

Two stakeholder events One service user event which resulted in production of a Consultation

Report- ‘Sounds Great? A consultation with people with learning disabilities on making audiology services better’ (appendix A). The group acknowledges that while the report provides valuable feedback, it has to be noted that it is based on the views of only eight service users with varying levels of disability

Comments from all events were used to update the guidelines.

Recommendations

The service user, their family and carers should be involved in implementing the key recommendations listed below:

Research, audit & evaluation

RAE1. Research is required to assess the impact of treatment of hearing impairment on all aspects of health and well-being including mental and emotional health and behaviour of the target group.

RAE2. Research is required to investigate the methods in which the needs of the target group can be diagnosed, assessed and managed effectively.

RAE3. Further research and investigation should be carried out to implement a structured programme of auditory development.

RAE4. Research programmes should involve organisations that work with and/or represent adults with learning disabilities as well as carers and the target group.

RAE5. A pilot research programme should be developed to produce evidence of effectiveness of a range of interventions. The Managed Clinical Network to be established as a result of these guidelines should be involved in agreeing the programme.

RAE6. The NHS, in partnership with local authorities, should undertake an audit of services available in their own area and draw on this to identify the rehabilitation team, which should be multi-disciplinary and include voluntary sector organisations where appropriate.

Awareness raising

AR1. NHS Boards should nominate a lead individual supported by a multi-agency steering group (including representatives from voluntary sector, advocacy and service users). This group should take responsibility for implementing awareness raising of sensory impairment in people with learning disabilities for staff and services who work with this target group. This will encompass a range of staff such as medical and nursing staff, teaching staff, community workers and community education staff. This list is not exhaustive.

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Executive Summary

AR2. NHS Boards, in partnership with local authorities, should nominate an individual supported by a multi-agency steering group to take responsibility for implementing awareness raising of sensory impairment in people with learning disabilities for carers (paid and unpaid) who work with this target group.

AR3. Healthcare staff should have the relevant and targeted information and appropriate skills which will enable them to deliver healthcare services effectively to clients with learning disabilities who have a hearing impairment. There are existing awareness raising packs that could be adapted for this purpose.

AR4. Competency development for key staff should be considered as part of professional development planning to ensure that they can meet the needs of the target group. This needs to be ongoing to cover staff turnover and should involve people with a learning disability as trainers.

AR5. Plans for awareness raising should be regularly reviewed and have full coverage of relevant staff within five years.

AR6. Awareness raising should ensure that all relevant staff have: the necessary competencies (knowledge, skills, understanding

and attitudes) required to address issues regarding hearing impairment in people with learning disabilities. Staff should receive training in deaf awareness and deafblind awareness as well as in communicating with people with learning disabilities

an awareness of their roles and responsibilities under the Disability Discrimination Act (DDA) (1995 and 2005)Error: Reference source not found

the knowledge, skills and understanding required to work across professional boundaries

an understanding of issues in relation to capacity to consent as outlined in A Good Practice Guide on Consent for Health Professionals, (NHS Scotland, SEHD, June 2006)Error: Reference source not found and the Adults with Incapacity Act (2000)Error: Reference source not found.

AR7. National training standards should be developed for awareness raising programmes.

AR8. Information regarding what Audiology can offer people with a learning disability and the processes involved should be included in all training for relevant NHS staff.

AR9. Information about Audiology should be available in accessible formats for people with learning disabilities and their family/carers.

Identification

I1. The use of otoacoustic emission (OAE) is recommended for use as a screening tool. Discussion with manufacturers has suggested that existing screening equipment as is used in Universal Newborn Hearing Screening (UNHS) may well be appropriate for use with adults with learning disabilities.

I2. There must be appropriate diagnostic and rehabilitative processes in place in the event that a diagnosis of hearing impairment is suspected.

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Executive Summary

I3. The testing process should be tailored to the needs of each individual (through an understanding of the impact of the learning disability on the individual):

Environmental noise should be kept to a minimum during testing Equipment should be assessed to ensure it is appropriate for

screening purposes in this target group NHS systems should develop local protocols for screening A paediatric style approach to hearing assessment should be

considered. Further guidance should be produced during the implementation process

The diagnostic and management issues around paediatric audiology should be investigated and considered for adoption as a model for the development of services for adults with learning disabilities

Verbal input from carers/family and others who are well known to the client should always be considered, although it should be borne in mind their assessment may be inaccurate

Training should be organised for people who are undertaking audiological testing of people with learning disabilities

An indication of the shortfall in terms of facilities and staff should be estimated and resources identified and agreed prior to implementing action locally

Protocols should be developed to enable regular follow-up of children with learning disabilities into adult life as there is a higher incidence of progressive hearing loss in this population

A referral process for adults suspected of having hearing loss should be developed to ensure that this group is not disadvantaged. This group should be included within any national waiting time target.

Referral pathways

RP1. The protocol for direct referral outlined in this document should be adopted for use in all NHS systems.

RP2. The protocol for hearing assessment should be adopted for use in all NHS systems.

RP3. A research programme should be developed for adults with learning disabilities focused on producing evidence of effectiveness for the application of recommended interventions.

Management

M1. A specialist service for people with learning disabilities should be established within current audiology services with easy access arrangements.

M2. Competency issues in staff involved in the service should be assessed and addressed e.g. Community Learning Disability Nurses could be trained to check the cleanliness of the ears as part of a health assessment.

8

Executive Summary

M3. Ear, Nose and Throat (ENT) /Audio Vestibular Medicine (AVM) support should be established prior to the setting up of services for this target group.

M4. Continuity of patient care should be considered through the use of named staff, for example from hearing therapy and ENT/AVM services.

M5. Flexible appointment times are likely to be required and should be considered in scheduling.

M6. The use of two audiologists/hearing therapists for the initial appointment should be considered, ensuring the provision of appropriate communication support is also available.

M7. A functional assessment should be conducted prior to referral to provide a baseline to measure the impact of treatment.

M8. The review of treatment should consider the impact on general health and well-being.

M9. If the person has a Personal Health Record (PHR) they should bring this to the appointment with the audiologist. The use of PHR should be considered and patients encouraged to keep it with them.

M10. Specialist learning disability services should be involved prior to the assessment stage. In many cases audiology needs to link closely with Community Learning Disability Teams with consideration taken of local circumstances.

M11. There should be forward planning for the needs of patients with additional disabilities and this should be considered when developing an assessment plan.

M12. All patients with learning disabilities and hearing impairment should be reviewed at regular (yearly) intervals.

M13. National standards for patient care should be developed; these may involve Quality Improvement Scotland.

M14. A co-ordinator who is the first point of contact, liaising with relevant professionals and arranging appointments, should be appointed for each patient.

M15. Each Health Board should have the skills of hearing therapy available to support and advise the management of functional hearing.

M16. Detailed referral information should be made available backed up by a verbal discussion between the referrer and the audiologist where appropriate.

M17. Referral to an independent advocacy service which has experience of both learning disability and hearing impairment may be beneficial.

M18. Appropriate communication methods to assist with patient management should be agreed and disseminated.

M19. Information targeted at service users should be in an appropriate format and developed in partnership with Learning Disability Services.

M20. Robust referral systems should be in place to ensure sufficient information about the person is available before they are seen.

Rehabilitation

R1. A key worker should be identified for the individual from within a multi-agency group.

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Executive Summary

R2. A collaborative, multidisciplinary approach to the management of each client’s rehabilitation should be undertaken to tease out the functional impact of each contributory factor.

R3. Local protocols for working practices should be developed to ensure that all involved in the care of the individual have an up to date picture of the rehabilitation process.

R4. Information should be incorporated in a Personal Profile that must be in an accessible format for the individual and others.

R5. Where a service is not currently available, partners should investigate alternative ways of addressing the gaps in provision.

R6. Information should be provided in a range of formats if required.R7. Rehabilitation techniques should be further developed.

10

Introduction

Section 1 : Introduction People with learning disabilities have a significant condition that affects their development and reduces their ability to function independently, socially, cognitively, practically and emotionally. They require a range of support systems and services to ensure that their needs are met. Many have complex needs with a higher prevalence of a range of conditions than the general population. This includes, individually or in combination, physical disability, mental ill health, autistic spectrum disorder, behavioural and psychological difficulties, epilepsy, sensory impairments and many physical health problems, which often go undetected and therefore untreated. ResearchError: Reference source not found has highlighted inequalities in relation to quality of life and health outcomes for this target group. Some may have additional behavioural, psychosocial and communication difficulties, which may be ameliorated if their sensory impairment is diagnosed, addressed and optimal treatment provided5. The NHS in Scotland is committed to reducing health inequalities and eliminating disability discrimination through tackling the physical, organisational and attitudinal barriers which create inequality and inequity in health and health service provision.

People with learning disabilities have higher prevalence of audiological needs than the general population6. Services for this target group need to take account of their specific needs and respond appropriately7.

Reported prevalence of hearing impairment varies from 12.3% to 47%8. Some causes of audiological impairment may be easily corrected, such as impacted ear wax, which occurs commonly in this population. However, a person with limited or no verbal communication skills may have difficulty in conveying deterioration in hearing. In addition, difficulties may be attributed incorrectly to an underlying behavioural problem. It is known that hearing impairment is frequently unrecognised and under-reported by (paid) carers. Hearing impairment increases with age, severity of hearing disability and the presence of Down’s syndrome9.

Early detection and intervention should be beneficial. It is possible to assess hearing in persons with profound learning disabilities who may have additional complexities, for example those with challenging behaviours and/or Autistic Spectrum Disorder (ASD), provided there is access to specialist equipment and specialist skills.

It is important to recognise that many people with learning disabilities and hearing impairment do not use or understand British Sign Language (BSL) or any other communication system including signs, symbols, pictures and objects. This should not hinder access to services. This target group should have services that promote their health and welfare and help them to lead lives that are as meaningful as possible. They should be able to access appropriate information, advice and help so that they can experience education, work and leisure that enables them to feel fulfilled and included in their local community.

11

Introduction

When communicating with this target group, it is important that communication (including written correspondence) about them is addressed to them in a format which they can understand.

British Sign Language (BSL) is the sign language used in the United Kingdom (UK). It is the first or preferred language for 50,000 to 70,000 people but is used on a daily basis by 250,000 people10. This figure includes hearing people who use BSL, deaf and hard-of-hearing people in the UK. It is a language of space and movement using the hands, body, face and head. Many thousands of hearing people also use BSL.

In addition, BSL has 'accents' or dialects. Signs used in Scotland, for example, may not always be understood in other parts of the UK, and vice versa. Some signs are even more local, occurring only in certain towns or cities. Likewise, some may go in or out of fashion, or evolve over time, just as terms in spoken languages do.

Makaton and Signalong are communication systems for people with cognitive impairments such as learning disabilities or other communication difficulties and were originally developed with signs borrowed from British Sign Language11.

A number of other issues should be considered when planning and providing services for this target group. Those from ethnic minorities may have additional issues, especially if English is not the first language used in their family. Consideration needs to be given to behavioural issues, which can become more pronounced and challenging when in unfamiliar surroundings.

People who are born deaf will have different communication needs and experiences to those with acquired deafness and those brought up by hearing parents.

Audiology services across Scotland are relatively poorly developed for this group. Needs assessments are difficult to find. Because of a lack of awareness in some carers of the detail of an individual’s needs, many clients do not reach “caseness” and hence their needs are not appropriately addressed.

As stated within the Disability Discrimination Act12, health service providers have a responsibility to ensure that their policies, practices and procedures do not make it unreasonably difficult for people with a disability to utilise their local healthcare services.

Most of the practical work associated with the creation of an equitable and accessible healthcare service can be achieved by raising awareness,

10 UKCOD (2000) A Submission to the Disability Rights Commission. UK Council on Deafness

11 Wikipedia – The Free Encyclopaedia [accessed June 2006]

12 Disability Discrimination Act (1995) (2005). The Stationery Office, London

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Introduction

challenging attitudes and changing practices, particularly in the areas of employment, service delivery and communication. Individuals working in the NHS must be provided with the appropriate knowledge, skills and understanding of hearing impairment if such changes in practice and service delivery are to be achieved. Providing staff with the necessary training will ensure that issues associated with hearing impairment are considered and integrated into mainstream activities rather than managed in isolation.

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Introduction

Policy content

The process of modernising audiological services provides an opportunity to address the audiological needs of people with learning disabilities with the expectation that it will lead to greater equity of care and opportunity, as well as reducing health inequalities. To achieve an optimal level of care a holistic approach is required that recognises the responsibilities of public services. If their audiological needs are met, access to a range of other services should be improved with greater opportunities for inclusion.

The government is committed to making this group a priority and this is supported by a range of other needs assessment and policy documents including:

Disability Discrimination Act (1995) (2005)Error: Reference source not found

Disability Equality Duty (2006)13

Scottish Executive (2000) Fair for All. Working Together Towards Culturally-Competent Services14

NHS Health Scotland (2004) Health Needs Assessment Report - People with Learning Disabilities in ScotlandError: Reference source not found

NHS Health Scotland (2002) Promoting Health, Supporting Inclusion15

Mental Health (Care and Treatment) (Scotland) Act 200316

British Association of Teachers of the Deaf (1997) Guidelines for Hearing Assessment of Children with Complex Needs17

National Deaf Children’s Society (2004) Vision care for deaf children and young people : Guidelines for professionals working with all deaf children18

Scottish Executive (2001) The Same as You? A review of services for people with learning disabilitiesError: Reference source not found

Adults with Incapacity Act (2000)19

Scottish Executive (Rev 2005) National Care Standards Support Services20

NHS Health Scotland (2006) Good Practice Guide on Consent for Health Professionals21

Education (Additional Support for Learning) (Scotland) Bill 200322

Scottish Executive (2004) Equality and Diversity Impact Assessment Toolkit : Patient Focus Public Involvement Fair for All The Wider Challenge23

NHS QIS (Quality Improvement Scotland) Quality Indicators24.

Concept of disability and learning disabilities

Definitions

Definitions of the key terms are given here to ensure that everyone reading this document has the same shared understanding.

Audiology

The study of hearing and balance, and the diagnosis, alleviation and prevention of hearing and balance impairment.

14

Introduction

Learning Disabilities

People with Learning Disabilities (LD) have a significant life long experience that has three components:

Reduced ability to understand new or complex information or to learn new skills (in global rather than specific areas)

Reduced ability to cope independently Onset before adulthood (before age 18) with a lasting effect on the

individual’s developmentError: Reference source not found.

In addition to this, the classification used by the World Health Organisation suggests that the person would have an assessed IQ falling below 70 (ICD 10; 1992) with additional functional deficits. Approximately 3.4% of the population are thought to have learning disabilities. Approximately 0.38% is thought to have severe or profound learning disabilitiesError: Reference source not found.

Learning Difficulties

The term ‘learning difficulties’ refers to a condition where people require additional support with learning. The majority of children with a learning difficulty do not have an identified diagnosis but some will have, which includes those with autistic spectrum disorder (ASD) and those with Attention Deficit Hyperactivity Disorder (ADHD). Many of those who have difficulties learning do not have associated learning disabilities as defined above. Approximately 10% of the general population are thought to have learning difficulties.

Learning difficulties within children and young people means a learning impairment which has a substantial and adverse effect on their ability to carry out day-to-day activities. This will typically lead to additional support being required, either within mainstream education or within different education provision to that made generally by an education authority for children and young people within mainstream schools.

Autistic Spectrum Disorder (ASD)

This is a pervasive developmental disorder characterised by a triad of impairments manifested before the age of three, those being:

impaired social interaction qualitative impairments in communication restricted, repetitive and stereotyped patterns of behaviour.

Learning disabilities may or may not be present.

Disability, handicap and impairment

The terms disability, handicap and impairment are often used inconsistently and interchangeably. This is particularly true when comparing terminology between child and adult services. For the purposes of this paper;

15

Introduction

disability refers to a physical or mental impairment which has a substantial and long term adverse effect on a person’s ability to carry out normal day to day activitiesError: Reference source not found

handicap refers to the consequences caused by the disability. A handicap is the degree to which the disability impedes, limits or restricts an individual’s participation in activities for which normal body function is needed.

The World Health Organisation (1980)Error: Reference source not found defines impairment as any loss or abnormality of psychological, physiological or anatomic structure or function. The degree to which this poses a handicap is a function of the extent and degree of the disability. Hearing loss, for instance, causes activity limitations (disability) and social/occupational participation restriction (handicap).

People with learning disabilities are not a homogenous group. The presence of other disabilities in the same individual tends to magnify the primary disability. Developmental disabilities do not usually occur in isolation. In many cases, disabilities may be present in the same individual but to varying degrees. Others may have autistic spectrum disorder with hearing loss. The presence of an undiagnosed hearing loss is likely to make the learning disabilities or difficulties appear worse than they actually are. In addition, undiagnosed hearing loss may lead to challenging behaviours and other types of psychological distress that could be ameliorated if the hearing loss is diagnosed and treated. Denmark (1994)25 highlighted that deaf people within the general population were more likely to be referred with disturbance of behaviour than other types of mental health issues.

Hearing loss is an invisible disability that affects people of any age group, from neonates to older adults.

People with learning disabilities will already have communication limitations, compromising their education, social functioning and safety. This may be compounded if there is a concurrent hearing loss.

Consequences of hearing impairment in people with learning disabilities

There are consequences for adult services and the individuals if hearing impairment, even mild or unilateral, is not identified early enough. If hearing impairment is not identified early enough in childhood, it may have consequences in adulthood. It may have serious consequences for the child’s speech, language, cognitive, emotional and social skills development. The child’s educational progress and achievements may be compromised if a hearing loss is unidentified and rehabilitation is not instituted.

16

Introduction

Orr et al in 200626 carried out a review of Community Care and Mental Health Services for Adults with Sensory Impairment and identified that a significant number of people experience conditions such as anxiety, depression, and social withdrawal particularly at transition stages and at the point of impairment where the loss was not congenital. The Sign of the Times (2002)27 report highlights the issue of misdiagnosis followed by inappropriate treatment due to communication difficulties and a lack of deaf awareness amongst staff. While these reports did not specifically look at people with learning disabilities the findings are likely to be relevant for this target group given the high rate of mental health problems experienced by people with learning disabilitiesError: Reference source not found. De Feu and Fergusson (2003)28 highlight a lack of specialist mental health service provision for adults with learning disabilities who have severe hearing impairment. NHS Health Scotland, formally HEBS 200429, point out the lack of deaf counsellors in Scotland and the need to improve deaf awareness for hearing counsellors.

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Awareness Raising

Section 2 : Awareness RaisingThe purpose of this section is to provide guidance on how the NHS in Scotland can raise awareness of the audiological needs of people with learning disabilities with appropriate staff and independent contractors.

This guidance will consider:

Professional groups whose awareness needs to be raised The target population for whom improvements are required Settings where the target group can be reached Methods to raise awareness Timescale for awareness raising activities.

Professional groups who need to be targeted in this guidance include:

All NHS clinicians and AHPs (Allied Health Professionals) All NHS nurses and support staff Audiologists British Academy of Audiology (BAA) British Society of Audiology (BSA) Carers – paid and unpaid Community learning disability teams Directors of Public Health Education department staff Housing officers Local Area Co-ordinators NHS Education for Scotland NHS Health Scotland Ophthalmologists Optometrists Paediatricians Primary care practitioners, including GPs, practice teams and community

NHS staff Respite Staff Social work staff Specialist Learning Disability Assessment and Treatment Clinicians Voluntary sector care providers.

To be effective, staff need to be able to recognise their roles in care pathways and to identify accurately the target population.

The target group of people with learning disabilities includes:

Adults Older adults.

It is recognised that the age range for adult services varies in different health boards and education authorities. This document focuses on people who would be served by adult services in a health board area.

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Awareness Raising

The target population also includes those with co-morbidities such as:

Down’s syndrome Attention Deficit Hyperactivity Disorder DeafBlind Autistic Spectrum Disorders Cerebral Palsy.

Settings where the target group may be accessed include:

Adult day care Assessment and Treatment Centres Audiology departments Boarding schools Day schools Further education Hospital settings Individual tenancy Leisure settings Looked after and accommodated settings Primary care settings Prisons Supported housing Workplace.

A separate sub group of the National Audiology Services Advisory Group is dealing with audiological needs for children. Many of the techniques used to address audiological needs of children are suitable for use when working with adults with learning disabilities. During the development of these guidelines there was on-going dialogue with the children’s group. This enabled sharing of ideas and should assist in addressing issues for children with learning disabilities, particularly at transition to adult services.

Methods to raise awareness

NHS

The NHS in Scotland is committed to the training and development of its staff. However, planning training and development can be challenging due to issues such as service capacity, the nature of the services being provided, conflicting demands and geographical locations. Awareness raising in relation to addressing the needs of people with learning disabilities who also have a hearing impairment is recommended to ensure that their health needs are met, they are included in society, not discriminated against, and that the inequalities gap is reduced. To ensure effective penetration of the target audience, it is essential that the NHS adopts flexible approaches through utilising a range of media to increase the learning opportunities for staff. This will maximise staff’s awareness of the issues and should lead to a reduction in inequalities in access to services, as well as reducing inequalities in health.

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Awareness Raising

Awareness raising methods proposed include:

Dissemination of this guidance to the professional groups outlined above Using protected learning time in primary care to raise awareness of the

issues and the implications Developing multi-disciplinary and multi-agency training sessions as an

additional way of raising awareness Incorporating appropriate information into existing training through

assessment of the course content and learning outcomes Producing briefing papers for professional journals Involving people who have a learning disability and a hearing impairment

in delivering awareness raising sessions Targeting pre and post registration training courses for all professional

groups who work in the NHS Developing partnerships to utilise the skills and knowledge of key

voluntary groups who work with and for the target groups Including learning disabilities within the BSc Audiology course content and

including within the CPD programme.

Raising awareness of carers

NHS organisations in partnership with their local authorities, should develop approaches to raise awareness in carers. Research undertaken on the subject of sensory impairment highlighted that carers were likely to underestimate the extent to which their loved ones or clients had a visual impairment. It is unlikely that this would vary in relation to hearing impairment.

Carers whose awareness needs to be raised include:

Unpaid carers e.g. families Paid carers e.g. day care staff, private provider organisations, residential

staff e.g. Sense, Enable, Choices, TACT Care teams e.g. respite care Staff in voluntary organisations.

To support this process, carer and patient information should be developed which is appropriate to their needs, along with an agreement on appropriate places for effective dissemination.

Development of competencies in the NHS and carers

All healthcare staff should have the relevant information, to enable them to deliver effective healthcare services to clients with learning disabilities who also have hearing impairments. They should be proficient in meeting the needs of the target group when carrying out their working role. Healthcare professionals working in specific specialised areas will require additional knowledge and skills30.

20

Awareness Raising

Awareness raising should ensure that all staff have:

The necessary competencies (knowledge, skills, understanding and attitudes) required to address issues regarding hearing impairment in people with learning disabilities

An awareness of their roles and responsibilities under the Disability Discrimination Act (DDA) (1995 and 2005)Error: Reference source not found

The knowledge, skills and understanding required to work across professional boundaries

An understanding of issues in relation to capacity to consent as outlined in A Good Practice Guide on Consent for Health Professionals31 and the Adults with Incapacity ActError: Reference source not found

The appropriate attitudes for working with this population, ensuring an understanding of issues around equality and diversity.

In addition organisations should ensure:

A co-ordinated approach towards the provision of training on hearing impairment in people with learning disabilities to all appropriate staff and independent contractors

The provision of information on the specific circumstances and barriers which prevent people with hearing impairments and learning disabilities from accessing health services

Adherence to agreed training standards for awareness training The involvement of people with hearing loss and learning disabilities in the

planning, delivery and evaluation of training programmes where this is possible

That staff are able to adopt good practice in the provision of a high quality equitable service to people with hearing impairments who also have learning disabilities

That staff are supported to attend awareness raising sessions and to meet Continuous Professional Development (CPD) requirements. Where appropriate, accreditation for awareness training courses should be sought.

A competency framework is included as appendix (B).

Recommendations


21

Awareness Raising













Resource implications

The competency and capacity available in organisations to ensure awareness raising is carried out effectively resides in a number of staff groups. It is likely that several staff groups may need to work together at a local and national level to ensure appropriate dissemination. Where appropriate voluntary organisations have a presence at a local level, it may be desirable to work with them to ensure more effective penetration of the target audience.

22

Awareness Raising

Investment will be required for staff training (including the voluntary sector), information materials in a range of formats and the involvement of service users and their carers.

23

Identification

Section 3 : Identification National screening programmes are aimed at detecting disease amenable to effective treatment and whose early detection will produce greater benefits. Universal newborn hearing screening (UNHS) aims to detect hearing loss in very young babies, allowing communication interventions to be started immediately, thereby enhancing the child’s opportunities for full integration and attainment of potential.

The advent of UNHS has demonstrated that a previously “difficult to test” population can in fact be screened successfully for potential hearing deficits.

Hearing assessment requires co-operation but, with technological developments, this level of co-operation has reduced. However, it is still important to note that some co-operation is likely to be required and that in individual cases hearing assessment may be very difficult to achieve.

Dual sensory impaired individuals will often use one of their senses in preference to the other. Often this is missed or not understood and therefore should be included within training programmes.

People with learning disabilities are likely to have impacted wax in their ears. Research has shown that there is a positive relationship between wax build up and the absence of back teeth (this population often have teeth removed). This build up of wax may be due to the lack of chewing action, which causes the migration of wax32.

Two hearing screening tests, for UNHS, are generally in use and are accepted. These are the automated auditory brainstem response (aABR) and the otoacoustic emission (OAE). The benefit of these two techniques is in the “automated” nature of the measurement and data analysis, i.e. minimal interpretation and technical complexity for the person administering the test, and the fact that these tests have good sensitivity and specificity.

Discussion with a number of manufacturers of screening equipment has confirmed that the use of the aABR is unlikely to be appropriate for the target population given that the current screening equipment looks at the performance of the nervous system of an individual, the pass/fail criteria of the instrumentation and that the technique has been designed around our understanding of the nervous system of a baby at 34 weeks gestation.

The use of the otoacoustic emission (OAE) (often described as either Distortion Product Otoacoustic Emissions (DPOAEs) or Transient Evoked Otoacoustic Emission (TOAEs)) has been used as a principal screening tool at the Special Olympics in Ireland and Scotland between 2003 and 2005. Discussion with manufacturers has suggested that existing OAE screening

32 Fransman, Denny (2006) Can removal of back teeth contribute to chronic earwax obstruction? British Journal of Learning Disabilities, 34(1) 36-41

24

Identification

equipment as used in UNHS may well be appropriate for use with adults with learning disabilities.

25

Identification

Screening with OAE results in a ‘pass’ or a ‘refer’. Referral does not necessarily indicate the presence of a hearing loss but suggests that more detailed investigative testing should be performed. Screening is then supported by appropriate diagnostic assessment and rehabilitative processes in place in the event that a diagnosis of hearing impairment is reached. A full range of assessments and services is required to support findings of screening.

Generally, the screening level of an otoacoustic emission (OAE) is a stimulus level of around 30dB. Where a response is elicited at this level a PASS is recorded, where one isn’t a REFER is the outcome. Screening conditions, such as environmental noise and patient noise and co-operation will affect the outcome of this test significantly. Those administering the screen should ensure that noise is kept to a minimum. Testers should have an understanding of the problems that an individual has as a result of their learning disabilities. It may be more appropriate and helpful to carry out screening when a principal caregiver who is known by the patient is present or a pre-assessment by a trained staff member has been carried out.

Based on existing equipment, it is possible to outline a screening process as this itself would theoretically be relatively simple. However further discussion is required to clarify in detail:

that the existing machinery with regard to pre-set test protocols is indeed suitable. It may be the case that protocols need to be modified given that this is an adult population as opposed to new born

the type of person who should carry out such a programme the standards with regard to noise and test conditions the referral processes in place to follow-up those identified as potentially

hearing impaired.

It is possible that a modified version of the diagnostic and follow-up arrangements that exist for UNHS programmes might be appropriate.

It is considered that a basic protocol for hearing screening should include:

Carer/patient questionnaire to ascertain opinion from carer/patient regarding hearing status. (Caution should be exercised as there is evidence that a carer’s opinion may not be an accurate reflection of the hearing deficit)

Ears and ear canals must be clear of wax and should be normal and healthy (NHS systems should refer to their local protocol for wax removal. Where no protocol is in place it is recommended that one be developed)

Screening otoacoustic emission (OAE) is administered at an appropriate level e.g. 30dB and provides a general sweep across 4 principal frequencies with a pass result on a “3 out of 4” positive response basis. The recommended stimulus level for the TEOAE click stimulus (lower level) is 80 to 88dB peak equivalent sound pressure level (pe SPL) as measured in the neonatal ear canal or an equivalent sized cavity33

Both ears are screened, both ears are required to pass Failure to pass of one or both ears constitutes a referral.

26

Identification

It is important to remember that the adult community with learning disabilities is diverse. This includes the degree of disability and the cause. Applying a single screening test may not be appropriate and indeed may not be possible due to, for example, issues of co-operation. If screening results in the need for diagnostic testing, this too may present a challenge. A comparison with babies and young children can be made in terms of the tests that are “appropriate” regarding developmental age and ability.

There is the need for a paediatric style approach to hearing assessment in general and most audiologists with experience of assessing adults’ learning disabilities will agree that this is how it needs to be approached.

As part of the improvement of audiology services, the Scottish Government has already implemented a programme of high quality education for paediatric audiologists in Scotland. A similar event should be organised for the training of people who are undertaking the testing of people with learning disabilities, drawing on the experience of paediatric audiology. It may be appropriate to undertake further discussions around screening to consider the more detailed diagnostic testing options that paediatric audiologists have at their disposal, as similar facilities and resources may need to be made available for adult learning disability testing. An indication of the need in terms of facilities and staff should be estimated and resources identified and agreed prior to implementing action locally.

It needs to be borne in mind that:-

The adult population with learning disabilities may suffer from a higher incidence of ear wax and other physical ear problems that make the performance of otoacoustic emission (OAE) testing (the most likely screening tool) often impossible.

Policy change has resulted in a move of the population with learning disabilities from large institutions to the community. With greater community integration those with learning disabilities may be harder to identify.

There are issues with regard to the size of any screening programme and resources that would need to be attached to it to make this practical, bearing in mind the complexity of ear cleaning.

As previously noted, the national coverage of UNHS in Scotland means that babies born with a hearing loss, including those with learning disabilities, will be identified soon after birth. This will reduce the requirement for an adult screening programme in years to come. Regular follow up of children with learning disabilities should continue into adult life as there is an incidence of progressive hearing loss in this population. On the assumption that the diagnostic services to follow up UNHS are in place then it is likely to be more appropriate to consider either expanding these or running parallel services that deliver the same care but to adults with learning disabilities. Again, previous discussion agreed that looking at the diagnostic and perhaps the management issues around paediatric audiology would serve as a good model for the development of services for adults with learning disabilities and therefore it appears reasonable to pursue this work on this basis.

27

Identification

As an attempt to summarise what the goals could be, the following comment is made:

Hearing assessment (not screening) should be conducted because of/when:- There is concern with regard to the hearing status of the individual

either from the pilot screening programme or awareness raising - The individual expresses the concern themselves- Professionals working with the individual, carers such as professional

care staff or family express concern

Hearing assessment should comprise of: History taking either from the client, carer/family or a review of pre-

existing medical notes (accepting that not all information will be available)

Ear examination Physical hearing assessment.

Physical hearing assessment, where practical, should be by: Pure tone audiometry (PTA) with tympanometry as indicated (both from

history and ear exam in addition to PTA) Visual reinforcement audiometry/distraction/behavioural/OAE/

electrophysiological on the basis of matching the suitability of the test to the client

Verbal input from carers/family and others who are well known to the client may be unreliable but should always be considered.

A referral process for adults suspected of hearing loss should be developed to ensure that this group is not disadvantaged. Existing protocols for the referral of children and of adults >60yrs already exist and these should be used to develop a referral protocol.

A hearing screening programme for adults with learning disabilities requires more evidence and research. It is recommended that a pilot programme be developed. It is important that organisations that work with and/or represent adults with a learning disability are involved, and that all the necessary resources are in place before this programme starts. The resources must include accessible information on what audiology can and cannot offer, the processes involved and what support can be offered. This information should be available in BSL as some adults with a learning disability will have deaf parents. Provision should also be made for access to BSL/English interpreters and guide communicators. In the meantime, open access services to meet the needs of adults with learning disabilities is recommended until that evidence is available. Furthermore, there is a need to develop rehabilitation techniques. In addition, progressive hearing loss is an issue for this target group and, therefore, assessment protocols should be developed to meet needs. An ongoing universal hearing screening programme for adults with learning disabilities will not be required provided UNHS is found to identify all new cases in the future and that a referral protocol is developed to ensure the existing population is able to access services. Techniques for the assessment and management of adults with learning disabilities should be developed

28

Identification

further in parallel to those used in Paediatric Audiology services with additional methods specific to adults with learning disabilities.

A suggested referral protocol for adults with learning disabilities suspected of hearing loss is based on the assumption that adults with learning disabilities will be referred to an audiology service.

Recommendations


I2. There must be appropriate diagnostic and rehabilitative processes in place in the event that a hearing impairment is suspected.

I3. The testing process should be tailored to the needs of each individual (through an understanding of the impact of the learning disability on the individual): Environmental noise should be kept to a minimum during testing Equipment should be assessed to ensure it is appropriate for









29

Identification

Resource implications in relation to identification

NHS systems will need to ensure that they have the staff, equipment and competence to address issues in relation to identification, diagnosis and rehabilitation. However, it is recommended that full implementation of this guidance should not commence until the results of the recommended pilot are produced. It is unlikely that the results of the pilot programme would be available for at least three years.

The training programme for professionals involved with the target group should be undertaken at regional level and should be referred to regional planning groups for consideration in their work programme.

The research elements should be considered by the Scottish Government.

30

Referral Pathways

Section 4 : Referral Pathways In order to ease the passage of people with learning disabilities into audiology services, it is recommended that clear referral pathways be developed. These should cover:-

Direct referral criteria Referral assessment Hearing assessment.

The assessment and diagnosis of hearing loss in the presence of learning disabilities presents additional challenges. Assessment and diagnosis is an interactive process and to be effective there needs to be adequate communication between the clinician and the patient. This interaction requires a minimal level of intellectual function and adaptive abilities for an individual to respond appropriately to speech and acoustic stimuli.

Criteria for the direct referral of adults with learning disabilities to audiology services34

Outline:

6 Evenhuis M. (1995) Medical aspects of ageing in the population with intellectual disability : II Hearing Impairment. Journal of Intellectual Disability Research, 39 (1) : 27-33.

7 Wilson D.N. and Haire A. (1990) Health care screening for people with mental handicap living in the community. British Medical Journal, 30: 1379-81

8 Yeates S. (1995) The incidence and importance of hearing loss in people with severe learning disabilities : the evolution of a service. British Journal of Learning Disability, 23 : 79-84

9 Warburg M. (2001) Visual impairment in adult people with moderate, severe and profound intellectual disability. Acta Ophthalmologica Scandinavica, 79(5):450-454

3 World Health Organization (1980) International classification of impairments, disabilities, and handicaps. Geneva, World Health Organization

4 Denmark, J.C. (1994) Deafness and Mental Health (1994) Jessica Kingsley Pub: London

13 Disability Equality Duty (2006)

14 Scottish Executive (2000) Fair for All : Working Together Towards Culturally Competent Services. The Stationery Office, Edinburgh

31

Referral Pathways

The criteria define the category of patient who may be referred directly to NHS Audiology Services for hearing assessment and the person who may make this referral.

Referrer:

General PractitionerHospital DoctorLearning Disability ServicesNurse (Practice Nurse, Ward Nurse, District Nurse)SelfRegistered Hearing Aid DispenserCarers (paid and unpaid).

Referral Reason:

15 NHS Health Scotland (2002) Promoting Health, Supporting Inclusion : The National Review of the Contribution of All Nurses and Midwives to the Care and Support of People with Learning Disabilities. The Stationery Office, Edinburgh

16 Scottish Parliament (2003) Mental Health (Care and Treatment) (Scotland) Act 2003. The Stationery Office, Edinburgh

17 British Association of Teacher’s of the Deaf (1997) Guidelines for Hearing Assessment of Children with Complex Needs

18 National Deaf Children’s Society (2004) Vision care for deaf children and young people : Guidelines for professionals working with all deaf children

19 Scottish Parliament (2000) Adults with Incapacity (Scotland) Act. The Stationery Office, Edinburgh

20 Scottish Executive (Rev 2005) National Care Standards Support Services, Blackwell’s Bookshop, Edinburgh

21 NHS Health Scotland (2006) A Good Practice Guide on Consent for Health Professionals

22 Scottish Parliament (2003) Education (Additional Support for Learning) (Scotland) Bill

23 Scottish Executive (2004) Equality and Diversity Impact Assessment Toolkit : Patient Focus Public Involvement Fair for All The Wider Challenge, Blackwell’s Bookshop, Edinburgh

24 NHS Quality Improvement Scotland (2004) Quality Indicators, February 2004, Learning Disabilities. Edinburgh

25 Denmark, J.C. (1994) Deafness and Mental Health (1994) Jessica Kingsley Pub: London

32

Referral Pathways

To assess the hearing threshold of individuals with the complaint of hearing loss or who have been referred from screening with a view to excluding a hearing loss or identifying a hearing loss and implementing an appropriate management/care plan.

Referral Criteria:

1. The patient must be 16 years of age or older and have a diagnosed learning disability (as defined earlier)a.

2. The presenting complaint must be that of hearing loss only. All other symptoms constitute the need for Ear, Nose and Throat (ENT)/Audio Vestibular Medicine (AVM) opinion.

3. Prior to referral, the patient must have been seen by a GP or appropriate healthcare professional to ensure ears and ear canals are wax free and the appearance of the ear canals and tympanic membranes are normal.

Guidelines and advice for audiology services:

Referrals should be vetted against the above criteria. Referrals outwith the protocol should be returned to the referring source or forwarded to Ear Nose and Throat (ENT)/Audio Vestibular Medicine (AVM) as appropriate.

Only Qualified Practitioners with suitably competent additional training and experience in the management of adults with learning disabilities should carry out a physical examination, history taking and formation of treatment plan along with the appropriate diagnostic testing and any subsequent work around the provision of amplification.

Prior to implementing this direct referral system, services should ensure that wax removal facilities and fast track referral to Ear, Nose and Throat (ENT)/Audio Vestibular Medicine (AVM) services are agreed to ensure a smooth and uninterrupted patient journey. Consideration should also be given to the scheduling of Direct Referral clinic sessions to maximise the available Ear, Nose and Throat (ENT)/Audio Vestibular Medicine (AVM) support that can be sought.

Ear, Nose and Throat (ENT)/Audio Vestibular Medicine (AVM) Services receiving GP referrals that fit this criteria should pass these directly to their local Audiology Service.

Direct referral applies to new patients, previously unknown to the Audiology Service. Patients referred, assessed and subsequently supplied with amplification are deemed lifelong patients and do not require re-

a Age limit subject to lowering by local arrangement30 Purcell M, Morris I, McConkey R. (1999) Staff perceptions of the communicative competence of adult persons with learning disabilities British Journal of Developmental Disabilities 45 (1): No88.: 16-25

33 www.nhsp.info/workbook.shtml

33

Referral Pathways

referral. They should be periodically re-assessed as part of their lifelong care and this should be carried out in consultation between the patient and the service.

Services should agree local communication protocols for communication between Audiology and referrers. This should also include the methods of onward referral.

Audiology protocol for the hearing assessment of adults with learning disability:

In addition to the vetting of direct referral requests in line with the referral protocol, the following conditions are referable and require that a medical opinion is sought from an Ear, Nose and Throat Surgeon (ENT) or a physician in audio vestibular medicine (AVM).

34

Referral Pathways

1) Partial or total obstruction of the external auditory canal and/or tympanic membrane that does not allow proper examination of the eardrum and/or would not allow the accurate taking of an aural impression. This includes wax and foreign bodies.

2) Abnormal appearance of the eardrum or outer ear to include a perforated eardrum, an active discharge or a history of discharge from either ear within the previous 90 days.

3) Persistent otalgia (earache) affecting either ear where there has been a continuous episode of pain for 7 days or more within the previous 90 days.

4) Vertigo (as classically described as “an hallucination of movement” not to be confused with the common unsteadiness associated with age) within the last 90 days.

5) Conductive hearing loss where audiometry shows 25dB or greater air/bone gap at two or more of the following frequencies: 500, 1000, 2000 Hz.

6) A unilateral or asymmetrical hearing loss as indicated by a difference between left/right bone conduction thresholds of 20dB or greater at two or more of the following frequencies: 500, 1000, 2000, 4000 Hz.

7) Hearing loss of sudden (24 hours) or rapid (up to 90 days) onset.

8) Sudden (24 hours), rapid (up to 90 days), or recent (within one year) worsening of an existing hearing loss. Where an existing audiogram taken in the last 24 months is available this shall mean a difference of 15 dB or more in air conduction threshold readings at two or more of the following frequencies: 500, 1000, 2000, 4000 Hz.

9) Hearing loss subject to fluctuation beyond that associated with colds.

10) Unilateral, pulsatile or distressing tinnitus (within the last 90 days).

11) Concern that speech discrimination is significantly poorer than would be expected for the client’s level of hearing.

12) Any other unusual presenting feature(s) as recognised by the Audiologist.

A model referral pathway is included in appendix (C).

35

Referral Pathways

Recommendations





The costs of identifying and treating abnormalities or conditions as a result of assessment should be considered, along with a possible impact on local waiting times.

A specialist service should be established within current Audiology services staffed by trained and competent staff.

36

Management

Section 5 : ManagementAs has been previously highlighted, adults with learning disabilities and hearing impairments are not a homogenous group. It is therefore not possible to define a single management approach which will meet the needs of all patients. All cases are unique – some straightforward, others complicated, for example some patients may require several appointments before an accurate diagnosis can be made. Waiting in busy and noisy environments can be problematic and should be considered by service providers. Simple solutions could include introductory visits, knowing in advance any likely issues, layout of the waiting room and provision of activities while waiting. It would be helpful to know in advance any behavioural issues present in an individual which may point to the likelihood of hearing impairment. From case studies some principles for management can be distilled and these form the recommendations for this section.

Recommendations












37

Management











The costs to set up a specialist service should be considered. The costs of a co-ordinator, training and time to develop service standards are component parts that need to be built into the programme. The costs of longer appointment times need to be assessed and will depend on the size of the local population who have learning disabilities. If training programmes and service standards are developed nationally with regional co-ordination then the Scottish Government should consider how this will be financed.

38

Rehabilitation

Section 6 : RehabilitationIn most cases, a hearing loss will only be one of the many issues facing an individual with learning disabilities. It can be easy for the impact of this hearing loss to be minimised or possibly even ignored when focusing on other more obvious or pressing difficulties. However, good management of a hearing loss can significantly improve an individual’s quality of life, communication, social interaction and self-confidence.

Individuals with additional difficulties are likely to require more support in order to manage their hearing loss optimally and may, therefore, require access to a wider range of rehabilitation services. Access to these services may be difficult for the individual and, in such cases, a key support worker should be identified for the individual. It is important that an appropriate key worker is identified by the individual and the people working most closely with them. There may already be an identified person who could take on this role, e.g. care manager, community learning disability nurse. The role of this key worker would be as a point of contact and to support the management of the individual’s hearing loss and the resulting implications of this. It is likely that this person would be a paid/unpaid carer or would be associated with an agency working with the client. The role of the key worker is to ensure that the necessary rehabilitation support is investigated and implemented for the individual. These guidelines suggest what rehabilitation support might be considered for an individual identified with a hearing loss. An independent advocate would also be of great benefit in enabling the individual to have his/her voice heard. The role of an advocate is to assist people in representing their own views and interests. In contrast to the key worker’s role, the advocate does not have responsibility for investigating and helping to manage the actual service provision for the individual.

It is essential to have a collaborative, multidisciplinary approach to the management of each client’s rehabilitation to tease out the functional impact of each contributory factor. Contact with existing groups such as Audiology Working Groups (AWG) and Community Learning Disability Teams (CLDT) should be established. It is recognised that the way in which such groups work may vary at a local level. However, where possible, these groups should try to liaise and help to establish a group of people who could develop local protocols and working practices. The outcome of this collaboration would be the development of communication lines to ensure that everyone involved has a full and up to date understanding of the individual.

There are already mechanisms for sharing information, such as Personal Communication Passports and Personal Health Plans. The relevant information from such documents should be integrated into a concise personal profile, which should include the information outlined in appendix (D) of this document.

The following agencies should be considered as part of the multidisciplinary rehabilitation team. It is recognised that not all of these agencies are available in every individual authority and provision of services will vary

39

Rehabilitation

between authorities. In some cases, more than one service may be provided by one individual or agency. The ideal service provision would include contributions from each of the agencies described. It is therefore recommended that each authority undertakes an audit of available services in their own area. Where a service is not currently available, authorities should investigate alternative ways of addressing the gaps in provision.

This might include the commissioning of new services or working with existing services to identify areas in which gaps in service provision might be covered by existing service providers.

Deaf awareness trainer

The Deaf awareness trainer identifies individuals and agencies involved with the client who would benefit from deaf awareness training. This training might include general information on optimum listening environments and communication tactics for people with a hearing loss. It may also include more specific information relating to the client’s own circumstances.

Speech and language therapist

The Speech and Language Therapist (SALT) can provide general advice and support on communication issues including those relating to hearing loss. It may also be necessary to request a full assessment of the individual’s language and communication ability in order to identify any additional communication support needs. Information from the SALT assessment should then be disseminated to all agencies involved to ensure that optimum communication is achieved for the client in all situations. The Speech and Language Therapist would most likely be the lead person in the development of a Personal Communication Passport. It is, therefore, important that the SALT ensures that the relevant information from this, or other clear information on the individual’s communication, is included in the personal profile as outlined earlier in this section. In most areas the SALT will be an integral member of the CLDT.

Community learning disability team

Many adults with learning disabilities who have additional complex needs, including hearing impairment, may well be in contact with members of their local Community Learning Disability Team (CLDT). Membership of the teams usually consists of clinical psychologists, community learning disability nurses, speech and language therapists, occupational therapists, physiotherapists, art therapists, music therapists, dietitians and consultant psychiatrists. The team may be able to provide additional specialist rehabilitative support to the adult with learning disabilities and a hearing loss particularly if they are experiencing mental health or behavioural problems associated with the hearing loss.

40

Rehabilitation

Social worker for the deaf

The Social Worker can provide an assessment of the client’s personal and social needs with regard to accessing auditory information within their environment. They will advise on and/or supply assistive listening devices that they feel are appropriate for the client. These may include radio aids, television, amplifiers, phone amplifiers, flashing/vibrating alerters, pagers and loop systems.

Hearing therapist

The Hearing Therapist can provide counselling and support for the management of a range of hearing and balance related issues including tinnitus, hyperacusis and tactics for social interaction. This role is being incorporated in the training of audiologists and there may not be one specific person with a designated role for providing hearing therapy. In such cases it is important to identify who will be responsible for these issues. The hearing therapist is likely to be the key worker in the Audiology Department in this context.

Lip-reading teaching

These classes may be an appropriate way of developing lip-reading skills as well as confidence and communication in different social contexts. Lip-reading tutors may be willing to provide individual support if it is felt that a class context would be inappropriate for the individual.

Sign language teaching

Most sign language tutors/classes focus on the teaching of British Sign Language (BSL). It is important for the team working with the individual to establish whether or not this would be an appropriate mode of communication for them. As in the case of lip-reading, it may be necessary to investigate the possibility of individual support for learning sign language rather than attendance at a class. It may be necessary to adapt BSL into a more appropriate means of using sign for functional communication or use another form of signing such as Makaton or Signalong.

Support groups

It might be appropriate for the individual to contact support groups to gain advice and support regarding conditions relating to hearing loss e.g. tinnitus, balance.

Audiology Department

The Audiology Department should provide clear information regarding the hearing assessment, type, degree and implications of the hearing loss (particularly regarding access to speech), type of amplification provided,

41

Rehabilitation

routine checking and management of amplification and clear guidelines for contacting the department when help or information is required.

42

Rehabilitation

It is recognised that access to some of the services identified above may be very limited due to lack of availability of resources in some areas. However, these guidelines intend to highlight the benefits of access to these specialist services and suggest best practice for individuals with a hearing loss and additional difficulties. At a local level, it is recommended that the relevant specialists draw up an information leaflet providing information on how to access services, advice and support. Ideally this information should be drawn together into a single pack with clear, easily accessible contact information. This should be given to the client/advocate at the time of diagnosis.

Information about Audiology Services should be available in an accessible format and consideration should be given to providing all relevant information in a range of formats.

Auditory development programme

This is an enhancement to the provision of most Audiological services. It progresses beyond the delivery of auditory aids to maximise the individual’s functional listening skills. At present, examples of good practice can be found in some adult cochlear implant rehabilitation programmes and it is likely that these could be adapted to meet the needs of other groups with a hearing loss. Currently it is unclear who would have the responsibility to deliver such a programme. Further research is required to investigate current examples of good practice and to develop a model based on this that could be implemented with this client group. One outcome from such research would be to identify who would develop, advise on and deliver appropriate individualised auditory development programmes

Recommendations







43

Rehabilitation


A key worker may be obtained from considering a change in working practices rather than appointing an individual for this purpose. However, there will be costs involved in the development of protocols and for any service gaps identified as a result of the audit of current services. Unpaid carers or volunteers should not be considered an alternative to securing appropriate financial resources for any service.

44

Conclusions

Section 7 : ConclusionsThese guidelines are intended to provide further support to local NHS systems as they continue with the audiology modernisation programme. Implementation should result in improvements in health and well-being for this vulnerable target group. In addition, there should be a reduction in inequity of service provision, inequalities in health and greater social inclusion. It is suggested that local audit should be the starting point for implementation of these guidelines, with clinical governance being the route to ensuring local compliance and service improvement.

45

Recommendations

Section 8 : RecommendationsThe service user, family and carers should be involved in implementing the key recommendations listed below:

Research, audit & evaluation

RAE1. Research is required to assess the impact of treatment of hearing impairment on all aspects of health and well-being including mental and emotional health and behaviour of the target group.

RAE2. Research is required to investigate the methods in which the needs of the target group can be diagnosed, assessed and managed effectively.

RAE3. Further research and investigation should be carried out to implement a structured programme of auditory development.

RAE4. Research programmes should involve organisations that work with and/or represent adults with learning disabilities as well as carers and the target group.

RAE5. A pilot research programme should be developed to produce evidence of effectiveness of a range of interventions. The Managed Clinical Network to be established as a result of these guidelines should be involved in agreeing the programme.

RAE6. The NHS, in partnership with local authorities, should undertake an audit of services available in their own area and draw on this to identify the rehabilitation team, which should be multi-disciplinary and include voluntary sector organisations where appropriate.

Awareness raising




46

Recommendations











Identification


I2. There must be appropriate diagnostic and rehabilitative processes in place in the event that a hearing impairment is suspected.

I3. The testing process should be tailored to the needs of each individual (through an understanding of the impact of the learning disability on the individual):

Environmental noise should be kept to a minimum during testing Equipment should be assessed to ensure it is appropriate for



47

Recommendations







Referral pathways




Management






48

Recommendations
















Rehabilitation




49

Recommendations




50

Recommendations

AppendicesAppendices

51

Appendix A

SOUNDS GREAT?

A consultation with people with learning disabilities on making audiology services better

A report by the Scottish Consortium for Learning Disability for the Sub Group on Learning Disabilities

(Audiology Service Advisory Group)

June 2008

Contents

Thanks..........................................................................................47

Acknowledgements.......................................................................47

Introduction...................................................................................48

Information....................................................................................49

Appointments................................................................................52

Training.........................................................................................55

Conclusions and recommendations..............................................57

Thanks

We would like to thank the people who gave their time to take part in the consultation event. 8 people attended and we are very grateful to them for giving their views and experience.

Acknowledgements

The following SCLD staff were involved in running the consultation:

Andrew Greensmith, SCLD Co-ConsultantKaren Indoo, Data Sharing and Knowledge ManagerClaire McCue, Administrator

Andrew and Karen designed and ran the consultation event and have written this report.

Claire organised the consultation event and contributed to the writing of the report. Claire was responsible for putting the images into the report.

Introduction

Audiology services are the health services that look at people’s hearing. An audiologist is a person who works with people to find out about their hearing needs.

The Scottish Consortium for Learning Disability held a one day consultation event to find out what people think about the audiology and other health services that they get.

8 people came to the event and they talked about information, appointments and training. 7 of the participants were people with learning disabilities and 1 person was a support worker. None of the group had much experience of audiology services, including one

individual who does have a hearing impairment. The person who does have a hearing impairment attends clinics only to get hearing aid batteries. None of the group had been asked to attend an audiology clinic for routine screening. The group did however feel that the points they made would apply to audiology services.

The group talked about the information that they get from the NHS before and after appointments. They talked about written and verbal information. They felt that this was not very good. There is too much jargon and it is not easy to understand

People thought that appointments were too short and doctors were too busy. The group thought that it would help to know more about what would happen at the appointment before they get there.

People thought that health professionals should get training in how to work with people with learning disabilities. They said people with learning disabilities should be the ones that should give the training. People said that health professionals should take time to know what their needs are.

Information

People want to know more about what will happen when they go to audiology clinics. We talked about what would help.

People said that visiting the department before their appointment would help. The group thought that if people knew what to expect that they would not be as worried.

1 member of the group said that their local hospital has a good system where staff will take you and show you the department before you go. The staff there will also explain what is going to happen when you go for your appointment.

Other people said that some hospitals have a person called learning disability liaison nurse. Part of the job of a liaison nurse is to get accessible information for people. The group thought that talking to the liaison nurse would help people to

be less worried because they would know what was going to happen at their appointment.

“Maybe someone you know should go with you, like a supporter, on a visit to the hospital before you go. That way you would know what the hospital is like.”

We talked about the information that people receive from health services and what they thought about this. We also talked about what would make this better. The group thought that sending staff who produce the information for training on how to write accessible information would help. Staff can take this back to in-house training sessions and pass it on to other staff.

People said that the letters they received from health services were too hard to understand. It would be better to have less jargon and clearer information about where you are going and what for.

The group understood that sometimes hard words have to be used. They said that if you have to use hard words then you should explain what they mean. The group thought that when information isn’t easy to understand it can be very scary and worrying.

People felt that the NHS was not good at making information accessible and an example of this is the NHS website. Some of the group had been involved in a project about accessible information where they had looked at the NHS website.

“It is often hard to know what you are going for until you get there.”

They thought that the information was not good and that the pictures that had been used to help people to understand were misleading. The pictures had not been used well and this made the information harder to understand. 1 member of the group had been involved in HARP (Health Advocacy Research Project) which spent three years working on a bank of images for use in hospital departments in Renfrewshire. These images were developed alongside people with learning disabilities to help to explain heath issues to people.

There was a lot of work put into the HARP images and departments in all hospitals in Renfrewshire have these but they are not being used.

The group thought that the hospital should use these types of resources to make sure that information is easy to understand.

The NHS needs to get better at using the information that it has about people. If you know a person has a learning disability make sure you use symbols and pictures. The letters you send should have no jargon and be easy to understand.

“If you develop these things you have to use them.”

Appointments

The group talked how long appointment times are and whether making appointment times longer would help. Some of the group felt that a longer appointment time might help the doctor to take more time over the consultation. This would help the doctor to diagnose symptoms earlier.

Longer appointment times would mean that the patient has more time to spend with the doctor and people would feel less rushed and worried. The group thought that a lot of people did not know that they could ask for longer appointments and that it is important to make sure that people know this.

The next thing the group talked about was personal health records. Most people didn’t know very much about these. Those that did thought that they did not make things better.

People in the group thought that if a doctor had to look at their personal health record they would not have time to talk about what they are there for.

“Longer appointment times can help but people need to know that they can ask for this.”

“They won’t work for doctors they are too busy.”

It would be more helpful if information was recorded on a patient’s medical record. Some of the group felt that it was the responsibility of medical staff to make sure that they know relevant information and pass it on. It is important that this information is on the person’s medical record.

Referrals should contain all the relevant information about the patient and why they are being referred. The patient should be able to ask for a copy of this to take with them when they go to an appointment. Some members of the group had been referred to the hospital or a different department but hadn’t been sure why.

The group agreed it would be helpful for someone to talk to a person before their

appointment and explain what will happen. People thought that it was a good idea and that a liaison nurse would be the best person for that job. All hospitals should have a liaison nurse.

They also said that it would be good if a support worker or someone who had been to the department before could help to explain what would happen at the appointment.

Most people thought that they would not need someone to help them speak up but that it would be helpful to be able to take a supporter or family member to help if there were things that were difficult to understand.

When the group talked about having someone go to the appointment with them they thought that this could be helpful sometimes. They said what would help is staff taking people seriously and making referrals sooner.

Most people thought that it is better to have someone with them when they go for an appointment that is about something new or where there are big things being talked about like treatment options. It depends on the type of appointment whether people wanted

someone to go with them. For routine things most people thought they would be comfortable going on their own.

It should be someone’s choice if they want to take someone with them to their appointments.

If people do take someone with them to an appointment, it is better if the same person goes with them to follow up appointments. If a different person goes every time and they don’t pass information on then it is not helpful.

Training

The group thought that it is very important that training is given to NHS staff who work with people with learning disabilities.

People thought that it was very important that people with learning disabilities are involved in designing and delivering training for staff. People with learning disabilities need support to provide training to professionals

and this has to be paid for even if individuals give their time as trainers voluntarily. The NHS needs to make sure that people are able to get this support.

People thought this training should take place in their final year of being students and staff should get regular refresher training. This is because good practice changes and people need to be reminded. Some of the group thought staff training should be done every 2-3 years but others thought if this is not possible then it should happen at least every 5 years.

Training for staff is really important and needs to be well funded.

One member of the group had been to training where staff took part in a role play exercise. This really got staff thinking about how they interact with people and the type of things that make a difference. If staff used this type of exercise it could help.

“Put your money where your mouth is.”

The NHS should commission people with learning disabilities to produce a training pack for NHS trainers to make sure that staff know how to work alongside people. They should also make sure that the training materials are used.

They thought that every health board should employ a person with learning disability as a consultant to make sure people have good awareness training.

Service managers and Chief Executives of NHS boards should be responsible for making sure that staff get good training. The group also thought that Lead Nurses for Learning Disability are important in making sure that people get training.

Every Community Health Partnership should have a Public Partnership Forum. This group is made up of people who use services. These groups should play a role in making sure that professionals are well trained.

Conclusion and recommendations

Overall the group thought that although improvements had been made to health services, there was a need for a lot more work to make services better for people with learning disabilities. The group did not think that much had changed in audiology services in recent years and made a number of recommendations they believe will support the delivery of better services. These recommendations were:

1. The information that the NHS sends to people should to be improved and made more accessible.

2. The people who produce information for patients should have training to help them understand how to make information accessible.

3. More Learning Disability Liaison Nurses should be trained and employed within the NHS.

4. Where they exist, patients should be given information about the liaison nurses and how to access them before they attend the hospital.

5. Existing work already done by HARP in Renfrewshire on accessible images for hospitals should be used within all departments in Scotland.

6. People should be given the opportunity to visit the department before their appointment.

7. People should be made aware that they can ask for longer appointment times.

8. People should know that they can invite a member of their family or supporter to any of their appointments. It should be up to the person themselves whether they want to take someone with them.

9. People with learning disabilities don’t want someone to talk for them at appointments. It is helpful to have someone there who can help with explaining things if that is needed.

10. Having Personal Health Records to take to appointments would not help. It is more important to make sure that professionals record relevant information in a patients file and pass this on appropriately.

11. Before a person goes for their first appointment at a clinic, someone should speak to them about what will happen when they get there. A support worker or liaison nurse would be a good person to do this.

12. People with learning disabilities should design and deliver training for health professionals. This training should be in how to work effectively with people with learning disabilities and understand their needs.

13. It is important that staff have regular refresher training to make sure that their practice keeps improving.

14. There should be a named lead person to make sure that staff are able to provide a service that meets the needs of people with learning disabilities. This should be someone who has enough authority to make improvements happen.

Appendix B

Appendix BA. Competency framework

As part of the equality and diversity agenda, this framework sets out core competencies which will guide learning and development of healthcare staff involved in the delivery of services to people with learning disabilities who also have a hearing loss. It should be applied together with individual learning plans or Personal Development Plans (PDP). The framework recommends using people with learning disabilities who have a hearing impairment as part of the awareness raising team.

Healthcare professionals working within specialist service areas will have more specific roles, which will demand additional knowledge and skills.

The framework should be used to improve knowledge, communications and skills and to influence the development of attitudes that are supportive of meeting the needs of clients with learning disabilities who also have a hearing loss. Due to the complex and differing needs of this target group, good practice may have developed in pockets. The sharing of this best practice should be encouraged and this will further increase awareness of the contribution made by each team member.

Issues to be covered in awareness raising

Where trainers have the appropriate skills, it is recognised good practice to use people who have a learning disability and hearing impairment to support awareness raising.

A.1 What is disability?

Knowledge

Disability is described by the Disability Discrimination Act (1995)Error: Reference source not found as someone who has a physical, sensory or mental impairment which has a substantial, adverse or long-term effect on his or her ability to carry out normal day to day activities. Long term is defined as “has lasted or is expected to last for 12 months”. It includes other impairments such as learning disabilities and mental health and problems which may have periods of remission, for example Cancer, Multiple Sclerosis and HIV.

People will be protected by the Act without having to provide evidence that they are disabled.

In relation to people with learning disabilities the following should be noted:

Appendix B

Sensory impairments are more common in older people with learning disabilities than older people with no learning disabilities35

Children with learning disabilities are similarly at higher risk of hearing impairment than children with no learning disabilities

Some causes of learning disabilities will be linked to an increase in the incidence of hearing difficulties e.g. Down’s syndrome.

Some genetic syndromes, which cause learning disabilities, are specifically associated with hearing loss as a result of structural abnormalities of the inner ear

Some people with learning disabilities are at accelerated risk of acquiring hearing problems

People with William’s syndrome, Fragile x and Autistic Spectrum Disorder (ASD) are more likely to have sensitive hearing and to become distressed/disturbed by certain sounds, presenting with difficult behaviour. In this circumstance hearing difficulties may be missed

Hearing deficit may result in a higher incidence of accident and injury

Limited communication skills may present a difficulty in communicating a deterioration in hearing

Staff need to be aware of possible hearing problems and how they can be prevented, detected by GPs and carers, and how they will be assessed and treated

People with learning disabilities may not know, for example, that their hearing aid is not working or how often is should be checked

The person with learning disabilities will not be aware of the appropriate frequency for hearing assessments

The person with learning disabilities and undetected hearing impairment is likely to evidence psychological distress which may be demonstrated by behavioural problems, heightened anxiety, agitation, low mood etc.

Skills

To recognise that some people with learning disabilities may have a hearing loss without it being obvious

To recognise that there may be an issue of acquiescence, where the person with learning disabilities may say “Yes/No” if they think that it is what the carer/clinician wants, even if they have not understood or heard. In addition, the person may try to hide their learning disabilities and so will nod at the perceived right time or place

To recognise when lack of hearing is the issue rather than lack of understanding

To recognise when hearing is a problem in addition to other mental health or physical problems36

35 Evenhuis, H.M (1995) Medical aspects of ageing in a population with intellectual disability: I Visual impairment. Journal of Intellectual Disability Research, 39, 19-25

Appendix B

To be aware of how the environment can be modified if the hearing loss cannot be treated

To learn alternative communication methods, and how to teach the patient new or alternative communication methods and provide psychological support to enable the person to cope with the impact of the impairment on his/her life

To be able to identify and source the mechanical devices and adaptations needed to enable patients to adjust to their hearing impairment. Staff also need to encourage the person to use their hearing aid effectively

To ensure that environments are free from physical barriers such as loud music and that loop systems and sign language interpreters are available if required

To know when and where the person should be referred on for more specialist input

Specialists in mental health/learning disabilities will need to learn how to meet the mental health needs of a person with learning disabilities who has a hearing impairment

Some people with learning disabilities and undetected hearing impairment may be wrongly diagnosed with psychosis or personality disorderError: Reference source not found

Paradoxically some people with learning disabilities and hearing impairment will experience psychosis which may wrongly be attributed to the hearing impairment. Specialist assessment will be requiredError: Reference source not found.

Attitudes

To encourage positive attitudes towards this population by ensuring issues around respect, diversity and equality are addressed with carers, staff and the public.

Benefits

People with learning disabilities will receive recognition of their needs during the delivery of healthcare services.

A.2 Effect of disability

Knowledge

Staff should be aware of the common effects of hearing impairment on the individual’s life, both medically, psychologically and socially. If the person is unable to hear they may feel isolated and become depressed. This may lead to increased anxiety as learned behaviour. The person may talk to himself or herself leading to misdiagnosis.

Skills

Appendix B

To understand the implications these common effects have for their own interaction with that individual

To recognise the physical and social barriers within the healthcare setting which may prevent people with learning disabilities from accessing or receiving such services.

Benefits

People with learning disabilities will have equitable access to appropriate healthcare services which are delivered by staff who will maintain their safety and dignity.

A.3 Communication

Knowledge

People with learning disabilities may have problems with communication. They may have difficulty seeing, hearing or conversing – speech may be slurred and difficult to follow, and become jumbled and not make sense. Even though the individual’s speech may not be understandable, it does not necessarily mean that the individual is confused or muddled.

Staff should be aware that some individuals with severe communication problems, who cannot consent to even basic healthcare procedures, might need to receive care under a Certificate of Incapacity according to the Adults with Incapacity Act.

Staff and carers should know that some people will communicate using BSL, Makaton, Signalong, the Deafblind manual or through the use of other communicative devices.

Staff/service users should know where to access speech and language therapists who work with people with learning disabilities.

Skills

Basic communication skills will help staff to communicate with people with learning disabilities who have communication problems. This might include speaking slowly and clearly, use of gesture, and knowing how to check on understanding. Staff will be able to consider the communication needs of people with learning disabilities and meet those needs.

Staff will need to have a working knowledge of the best way to communicate with people using different communicative methods.

Staff should know how to access independent advocacy services.

Benefits

Appendix B

People with learning disabilities will benefit both physically and emotionally by being able to maximise their opportunities to communicate with staff and thus make their needs and wishes known.

Appendix B

A.4 Visually impaired

Knowledge

Some individuals with learning disabilities who have a hearing impairment may also have eye conditions, which affect their vision to a greater or lesser extent.

Skills

Staff should be able to find out whether an individual has such difficulties and position themselves and objects where the individual can see them. They should ensure that the individual wears their spectacles if they are able to tolerate these

Staff should ensure that environments are free from physical barriers and that information is provided in appropriate formats.

Benefits

People with learning disabilities will be supported in a safe environment and through appropriate communication be able, where possible, to make informed choices.

A.5 Challenging behaviour

Knowledge

An individual’s condition may cause emotional distress, cognitive impairment and frustration with physical and communication limitations, and may result in that individual behaving in a manner which is difficult for others to cope with and understand. Amelioration of the hearing problem may lead to an improvement and lessening of challenging behaviour.

Skills

Staff should be able to source and seek advice on the best way to cope with and understand this behaviour. Carers who are familiar to the patient may have developed methods, which can help other carers deal with the situation

Staff should have access to consultancy advice from clinical psychologists who work with people with learning disabilities.

Benefits

People with learning disabilities will receive appropriate, consistent input from staff to increase the likelihood of having their emotional and cognitive needs supported, and to enhance their quality of life.

Appendix B

A.6 Safety

Knowledge

Physical limitation may result in an individual being restricted in doing things for themselves and may put them at risk from injury without realising it. This will be increased if there is a hearing impairment.

Skills

Establish an individual’s level of ability in a sensitive and supportive manner

Ensure that the person is supported to function with optimum autonomy with safety issues having been considered

Consider referral to specialist Occupational Therapists (OT).

Benefits

People with learning disabilities will maximise their safety, dignity and independence through appropriate support and input from staff through having their hearing potential maximised.

A.7 Specialist care

Knowledge

Staff will be aware of appropriate tools and aids to diagnosis and rehabilitation available to optimise activities of daily living in a hearing impaired patient who also has learning disabilities.

Skills

Staff will know how to use equipment appropriate to the needs of people with learning disabilities within healthcare service areas

Staff will be aware of onward referral to further appropriate specialist care

Staff will have undertaken violence and aggression training.

Benefits

People with learning disabilities are more likely to receive specialist care in appropriate settings with better outcomes in care if everyone they meet is aware of the importance of meeting their specialist needs.

Appendix C

Appendix C

The Care Pathway for Adults with Learning Disabilities Accessing Hearing Services37

Extracts from some care pathways are shown below.

The accompanying notes form an integral part of the pathways and should be read in conjunction with the diagrammatical forms.

Abbreviations used in the pathways are given in the glossary.

The pathways show the basic blocks to enable Audiologists to build an individual care plan.

Full details of the care pathways can be found on the Audiology Services Advisory Group website http://www.scotland.gov.uk/Topics/Health/health/audiology/introduction

37 North Stafford Combined Health Care NHS Trust, University Hospital of North Staffordshire NHS Trust (Department of Audiology) (2006) Care Pathway for Adults with Learning Disabilities Accessing Hearing Services in North Staffordshire in Line with Modernisation of Hearing Aid Services

http://www.scotland.gov.uk/Topics/Health/health/audiology/introduction

Appendix C

The North Staffordshire Care Pathway for Adults with Learning Disabilities accessing Hearing ServicesError: Reference source not

found

There are three levels of complexity. The first page is the most simple – level 1. Levels 2 and 3 show the same basic pathway but with increasing levels of complexity. Each level is an expansion of the previous one.

LEVEL 1

This shows the 4 basic stages in the patient journey. Level 2 and the screening section of level 3 are shown below with their accompanying notes. The full North Staffs pathway is available on the CD/DVD/Website.

Referral

Assessment

Intervention / Rehabilitation and follow up

Audit

Appendix C

LEVEL 2

Referral

Screen

Audiology Assessment Part (a)

Assessment Part (b)

Fitting

Follow-up appointment

Hearing Therapy Appointment

Audit

Discharged Review in 3 years

Existing patient

New patient

Referral to appropriate agencies can be made via Care Co-ordinator should significant concerns be raised regarding the patient’s health or care needs. The patient may therefore stop or leave the Care Pathway at any point

Appendix C

REFERRAL LEVEL 3

New patient

Referral to Audiology

Letter to GP & referrer

Hearing History Questionnaire to person’s home

Discharged

Q’aireNot returned

Q’aire Returned to Audiology

Ear Care Programme

ScreenBalance Clinic or other as needed

Referral to appropriate agencies can be made via Care Co-ordinator should significant concerns be raised regarding the patient’s health or care needs. The patient may therefore stop or leave the Care Pathway at any point

Appendix C

Notes for pathway

Learning Disability New Referral Protocol

1. New Referral

1.1 New patients are referred to the Hearing Impairment team. Referrals are received from the person, any of their carers, family members, social services, GP, or any other competent person. A letter of acknowledgement should be sent to the referrer.

1.2 The Hearing History Questionnaire is sent to the person’s home to be completed and returned.

1.3 If the questionnaire is not returned within 4 weeks, send a further copy out with a letter stressing the need for its completion and return. Contact the individual to inform them of the importance of completing this, and that it must be returned before a visit can take place.

1.4 If the questionnaire is still not returned the patient is discharged and the GP and original referrer are informed of this. The patient can be re-referred at any time.

1.5 On receipt of the completed questionnaire the Audiologist will make an appointment to carry out an initial screen of the patient’s hearing. This appointment may be made over the phone, in person or by letter. This screen may be undertaken as a domiciliary visit. Advise the carers to make sure someone checks the patient’s ears prior to this appointment to make sure they are clear of any wax/infection. The appointment can not proceed if the ears are not clean and healthy.

1.6 If the patient has an infection and/or build up of wax the patient will be referred to the GP or the local Ear Care Programme, to have any wax removed, or infection cleared up. This might be better carried out before the original referral.

1.7 If the questionnaire shows that a hearing assessment is not required i.e. that there are no noticeable hearing difficulties and no problems with the ears, but that the carers requested the appointment as a “check up” then the patient may be discharged at this point. The patient may be referred back to the GP for any further health care intervention. The patient can be re-referred at any point.

Appendix C

Note 1:Reason for the requirement of a completed Hearing History Questionnaire is to meet Direct Referral guidelines. “Red flags” may be raised after reviewing the questionnaire requiring a referral to ENT/AVM in order to rule out any sinister causes for the difficulties that the patient is experiencing. The questionnaire can help to outline other difficulties that the patient may be experiencing such as tinnitus or balance problems, which may require further intervention. Therefore it is essential that the Audiologist has as much information about the patient as possible in order to perform their role to their optimum ability and to ensure best practice standards are being adhered to.

Note 2: If the questionnaire indicates that the patient may have an additional balance problem, the audiologist may refer the patient to the Balance Assessment Clinic for Adults with Learning Disabilities. This may entail the patient leaving the pathway to enter the Balance Assessment Clinic Care Pathway, if no hearing difficulties are reported. Or it may entail the patient being placed on two care pathways simultaneously. However, the patient may be referred to the Balance assessment clinic at any point along the care pathway. For instance, the screener may wish to visit the patient before making a final decision to refer to the Balance Assessment clinic, although it is the questionnaire that will inform the screener initially of any potential need to make this referral.

Appendix C

SCREEN AND ASSESSMENT LEVEL 3

Existing patient

Risk factors present

Review 12 months

No risk factors

Discharge

Audiology Assessment Part (a)

Review Observation Questionnaire / Otoscopy /

Hearing screen

Assessment HT – Tinnitus etc

Red flag or ENT problem

ENT/AVM

Fail

Referral to appropriate agencies can be made via Care Co-ordinator should significant concerns be raised regarding the patients health or care needs. The patient may therefore stop or leave the Care Pathway at any point

Balance Clinic or other as needed

New patient

Screen

Otoscopy,Tympanometry

OAE/PTA/other screen

Ear Care Programme

Pass

Incomplete -Conditioning work

up to 3 visits to repeat screen

Observation Questionnaire to carer

HT – ALD

Appendix C

Learning Disability Screening Protocol

2. Initial screening (May be as a Domiciliary visit):

The screener could be an Audiologist, a Senior Assistant Technical Officer (SATO), or other trained professional.

2.1 The initial screening should consist of otoscopy, Tympanometry, and if possible Pure Tone Audiometry (PTA). PTA is to be performed at 500Hz, 1kHz, 2kHz and 4kHz. Pass level criteria = 20dBHL or less. NB PTA may have to be undertaken in a non conventional manner. Otoacoustic Emission (OAE) screening may be an alternative.

2.2 If otoscopy reveals that the patient has an infection or wax blocking the eardrum, the patient is referred back to the GP or the local Ear Care Programme. This may have happened since the initial referral.

2.3During this appointment a decision will be made as to whether the patient will be seen in a clinic or as a domiciliary visit in future appointments.

2.4 If the screen cannot be completed at the first visit, further conditioning work (conditioning care plan) with carers – preferably the key worker to enable completion of the hearing screen. (Up to 3 visits in total may be made to complete the screening process).

2.5 If the screener is unable to complete the screen give the individual and their carers the Observations Questionnaire for them to complete. The screener must stress that the patient’s key worker should be involved in completing the questionnaire. Refer to Audiology as a Learning Disability Direct Referral (LD-DR) after the questionnaire is returned.

2.6 If the Observation Questionnaire is not returned send a further copy to the key worker with a letter stressing the importance of the completion of this questionnaire. In the letter, state that the patient cannot be referred to Audiology until a completed questionnaire has been returned to the screener.

2.7 If the patient fails the screen, they are referred to Audiology.

2.8 If the patient has hearing within normal limits but risk factors of developing a progressive hearing loss (e.g. Down’s syndrome) they are placed on the Audiology review waiting list. The screener can use their clinical judgement when placing patients on this review waiting list.

2.9 If the patient has hearing within normal limits, and no risk factors of progressive hearing loss discharge the patient back to the GP/referrer.

2.10 The screener must write a letter to the original referrer and GP to inform of them of the outcome of the screen and the follow up arrangements if any.

Appendix C

Note 3: The screener may have been unable to complete the screen on the first visit due to the environment being too noisy, upon otoscopy, a need for implementation of the ear care programme, or the patient not being conducive to the test on that particular day. The screener may then use their clinical judgement to attempt the screen on a second visit rather than implement the conditioning care plan immediately. The conditioning care plan can be introduced at any time according to when the screener decides to implement it.

Note 4:Reason for the requirement of a completed Observation Questionnaire is to give the Audiologist as much information about the patient as possible in order to perform their role to their optimum ability and to ensure best practice standards are being adhered to, given that the patient is unable to perform a PTA. This information gives the Audiologist a basic idea of how well the patient can hear within their home environment, giving a starting point for carrying out the Audiological assessment such as Free Field Audiometry in order to try and more accurately fit the patient with the hearing aid if this is the intervention which is found to be appropriate.

Appendix C

The next example is from Derbyshire Hospitals NHS Trust and was provided to the group by:

Denny Fransman Specialist SLT - CTLDAlfreton Primary Care CentreChurch StreetAlfretonDerbysDE55 [email protected]

Audiological services for people with learning disabilities

Background:The recommendations in this paper are based on the clinical evidence collected from approximately 1000 service users with learning disabilities. All these people were assessed and supported by a specialist clinic based in the Acute Hospital and staffed by both Acute and Learning Disability professionals.

Mainstream Audiology and ENT services can provide an adequate service for many people with learning disabilities (PwLD). However, a large proportion of (PwLD) have more complex needs and their needs cannot be met by generic services. When they do access mainstream, it is likely that an accurate assessment will not be obtained or that rehabilitation will fail. These are the people who require more specialist provision.

Audiological pathway for PwLD:By definition, the people who will be accessing a specialist pathway for audiology will be those with more complex needs. The complex needs of this group means that for a clinical pathway to be effective it needs to be focussed on outcomes NOT processes. Clinical experience has shown that for a conventional pathway to be all encompassing, it will also be so complex that it would be incomprehensible. It is therefore believed that prescriptive clinical pathways are neither feasible nor desirable. The only effective approach is to have a pathway that is focussed on outcomes NOT processes.

Pathway for audiological services for PwLDThe proposed pathway is divided into 2. The pink area contains the target outcomes that need to be achieved. The blue area contains a list of possible processes that could be used to achieve the outcomes.

The processes to be selected will be largely dependent on 3 factors:1. The specific needs of the person being assessed i.e. severity of LD,

behaviour, adaptability etc2. The resources available to the professionals doing the assessment3. The skills of the professionals conducting the assessment

mailto:[email protected]

Appendix C

Potential ways to achieve outcomeTarget outcome

3. Examination of the ear with otoscopy / operating microscope.

4. Treatment of any pathology (medical or surgical)

5. Tympanometry

6. Assessment of hearing levels.

7. Decision regarding desirability of amplification

2. Information about Communication needs

8. Aid fit (moulds if appropriate)

9. Accessible communications

10. Support to sustain hearing aid use

1. Reliable ENT history

11. Monitoring of people at risk

questionnaire (pre-assessment)

interview at assessment home visit – carer interview

wax removal required first? desensitisation required? examination at assessment examination at home visit

GP opinion ENT opinion support care plan for

medication?

preceded by desensitisation?

carry out at assessment

pure tone air/bone- pure /warble

operant conditioning? OAE’s evoked response testing free-field pure tone free-field environmental

sounds speech discrimination testing

Based on: hearing assessment communication needs carer support

preparatory desensitisation?

impressions

clear verbal communication easy read written

information

review appointments written care plans training easy read written

information

regular hearing tests for people at risk of hearing loss

Appendix C

The Lothian Primary Care NHS Trust and East Lothian Health Care Co-Operative sent their pathways (Contact Lucie McAnespie,Speech & Language Therapist, Edenhall Hospital, Musselburgh, EH21 7TZ tel 0131 536 8105)[email protected]

Again this is an extract and the full pathway is on the CD/DVD/website. This is their hearing screening assessment which is undertaken by the East Lothian Learning Disability Team (Speech & Language Therapy & Community Nursing).

Date of Screening Assessment:

Name : Date of Birth :Address : Telephone :

Diagnosis :GP : Address & Telephone :

Attended with :

BACKGROUND INFORMATION - CARER’S PERCEPTION1. Has the person a history of hearing problems? YES NO DK2. a) Has the person attended previously for hearing

assessment? YES NO DK2. b) If yes, when was the person’s hearing last

checked formally? YES NO DK3. a) Has the person ever been issued with a hearing

aid? YES NO DK

3. b) If yes – Does the person wear his/her aid regularly? YES NO DK

3. c) When was the hearing aid last checked formally? DK4. Do you think the person hears well:

ALWAYS USUALLY SOMETIMES NEVER (please circle)5. Do you think the person’s hearing fluctuates? YES NO DK6. Do you think the person’s hearing has

deteriorated recently? YES NO DK7. Does the person suffer from a lot of head colds? YES NO DK8. Does the person suffer from ear infections

frequently? YES NO DK9. Do the person’s ears frequently have wax? YES NO DK

HEARING AID (if appropriate)Batteries functioning? YES NO

Ear piece clean and functional? YES NO Client able to operate? YES NO

* DK = Don’t know

mailto:[email protected]

Appendix C

Lothian Primary Care NHS Trust, East Lothian Health Care Co-operative, East Lothian Learning Disability Team, Hearing Screening Assessment (Cont)

PHYSICAL EXAMINATION(R) Outer Ear Wax None Slight Moderate Severe

Excema None Slight Moderate SevereOther None Slight Moderate Severe

(L) Outer Ear Wax None Slight Moderate SevereExcema None Slight Moderate SevereOther None Slight Moderate Severe

Other observations:

Comments:

RESPONSE TO SOUNDFreefield Testing – Sound from Behind - (L), (R) differentiated if possibleTurns to sound /other response (please detail)Non-speech soundsManchester rattle (L) Yes No (R)Warbler (L) Yes No (R)Object [if no response to above] (L) Yes No (R) eg paper, keys (L) Yes No (R)

Everyday sounds – Recognition – match to picture/other response (detail)Tap Yes No NCClock Yes No NCPhone Yes No NCAmbulance Yes No NCSpoon in cup Yes No NC

* NC = Non Compliance

Appendix C

Lothian Primary Care NHS Trust, East Lothian Health Care Co-operative, East Lothian Learning Disability Team, Hearing Screening Assessment (Cont)

Responds to sounds from behind – eg by Facial expression, Turns, Raises hand / action, Repeats sound, Other (please detail)(m) Yes No NC (s) Yes No NC (r) Yes No NC(b) Yes No NC (z) Yes No NC (sh) Yes No NC(t) Yes No NC (k) Yes No NC (ch) Yes No NC(d) Yes No NC (g) Yes No NC (d) Yes No NC(f) Yes No NC (n) Yes No NC (ee) Yes No NC(u) Yes No NC (l) Yes No NC (p) Yes No NC(ah) Yes No NC (oh) Yes No NC (oo) Yes No NC

Response to instructions and words from behind eg by Facial Expression, Turns, Raises Hand, Action, Repeats wordTurns to name Shoe Yes No NC Fish Yes No NC“clap your hands” Jumper Yes No NC Man Yes No NC“stand up” Boat Yes No NC Cardigan Yes No NC

Car Yes No NC Sun Yes No NC

OR

Response to words – match to picturesShoe Yes No NC Fish Yes No NCJumper Yes No NC Man Yes No NCBoat Yes No NC Cardigan Yes No NCCar Yes No NC Sun Yes No NC

Word discrimination to pictures/wordFeet Sheet* Yes No NC Cot Cat* Yes No NCCoat * Coke Yes No NC Dig* Dog Yes No NCShop* Chop Yes No NC Sheep* Ship Yes No NCBread Bed* Yes No NC Sea* Saw Yes No NC

RESPONSE TO FORMAL AUDIOMETRIC SCREENING or or NC(R) ear 250 500 1000 2500 4000 7500(L) ear 250 500 1000 2500 4000 7500

Appendix C

The Glasgow Learning Disability Partnership comprises: Rochelle Bakey, Audiologist, Southern General Hospital; Andrea Jones, Speech and Language Therapist, South West Area

Learning Disability Team; Barry Campbell, Audiologist, Gartnavel Hospital; and Elspeth McLean, Speech and Language Therapist, North Area

Learning Disability Team.Their full pathway is also on the CD/DVD/Website and extracts relating to assessment and hearing aid fitting are shown below.

Initial Visit (45 Minutes)SLT and Audiology assessment

1. Case History

2. Carer info

3. Otoscopy and wax removal by ENT nurse if required, (Nurse clinic runs alongside).

4. Assessments available

OAE

PTA

Bone conduction

Tympanometry

Free field environment warbler

Speech discrimination test.

5. If assessment complete, results of assessment given at this point. If aiding, give this information at fitting appointment: “What happened today?” sticker sheet in accessible format “Your hearing/guide to what you might hear” in accessible format “Things to consider when communicating” information for carers in

accessible format.

6. Outcome/Options after initial appointment Continue with assessment at next appointment Return for further wax removal Issue hearing aid at next appointment Discharge :

Write report to GP, referrer and care manager (carer and client have accessible guide to hearing)

Review patient in 2 years for repeat Audiogram Follow up in community available through SLT.

Hearing Aid Provision

Appendix C

1. Initial assessment visitMould impression to be taken on first assessment visit if hearing aid being offered.

2. Hearing aid fitting appointment (45minute appointment)Hearing aid fitted approximately 4 weeks later in mainstream clinic with Audiologist: Accessible information on hearing aids given (“Digital Hearing

Aids”) Information on what person’s hearing is like without hearing

aid and what to expect with aid, (“your hearing guide”) Information on troubleshooting problems Client trials aid for approximately 4 weeks (any problems foreseen,

Audiologist asks SLT to see in the community during 4 weeks).

3. Review of hearing aid appointment (30 minute appointment)Reviewed at ALD clinic with SLT and audiologist: Any problems with hearing aid? Free field assessment with aid in Speech discrimination test with aid in.

4. Outcome/options at this stage Discharge from learning disability clinic – client/carer to contact if

any problems arise and review audiogram appointment offered in 2 years

Report sent to GP, referrer and care manager If any review or fine tuning of aids required after this, an

appointment would be made with Rochelle at hearing therapy clinic.

Appendix C

Notes on Reasons for Stages on Glasgow Joint ALD Care Pathway

Initial Assessment

An initial appointment time of 45 minutes is offered. More time can be made available if required; however, we have found that clients may not sustain concentration or motivation for a longer time.

We have a range of assessments which we can utilise depending on a client’s level of learning disability and understanding. The use of these varies as each person’s participation level will be different and factors such as rapidly habituating to noises can make testing difficult.

Having two trained people to test, in our case, an audiologist and a Speech and Language Therapist are essential with this client group. An SLT is involved in our team to ensure good follow up for the person in their home environment and community. As hearing has a direct impact on communication the ALDT SLTs were finding that poor outcomes at mainstream audiology for people with LD were impacting on their work.

Information on Assessment Results

Accessible information is given on:

What happened at the appointment.

Your hearing/guide to what you might hear.

Communicating with someone with a hearing loss (for carers).

Options After Initial Appointment

As the method of testing and time taken will be different for each person, we are flexible in being able to offer further assessment appointments. The majority of people have one assessment session; some require two. After this, however, further assessment would probably be carried out on a domiciliary basis using functional, observational assessment, as testing in the clinic environment had not yielded sufficient results.

Appendix C

Throughout each of the pathways suggestions are made for the length of appointment times. For instance, from the North Staffs pathway:

Suggested minimum appointment times:

Screen appointment: 45 mins(this could be done as domicillary)

Total of 3 more visits tocomplete screen: up to 3 hours in total

Hearing Assessment part a. 1 hour

Hearing Assessment Part b. 1 hour

Fitting Appointment 1 hour

Volunteer service 45 mins

Follow-up Appointment 30 mins

Hearing Therapy Appointment –ALD assessment 45 minsStaff training 2 hours

As with other parts of the pathways these suggestions are exactly that. It is difficult to be prescriptive and each Audiology Service should agree an individual care plan for each person referred to them.

Appendix D

Appendix D

Examples of good practice

Personal communication passports38

Some speech and language therapists are practised in creating these passports which are a practical and person-centred way of supporting people who cannot easily speak for themselves. There are published guidelines for good practice in communication passports.

NHS Ayrshire & Arran personal health records

Beginning in November 2003, the LDS undertook a pilot of a locally developed Personal Health Record with service users already living in the community, and children in transition between child and adult services. The project aimed to ensure that health practitioners have access to relevant information about a client, by providing client’s (or their primary carer, where appropriate) with a small, convenient booklet containing information such as the health problems they experience, the professionals they are seeing, and what medication they are taking. It is a similar resource to that already in use for children, and that introduced by the Scottish Executive for travelling people. It shares with these an aim to support the care of a vulnerable population with an accessible means of reading and recording relevant health information.

The outcomes of the pilot supported the idea of implementation of PHRs as an optional resource for service users. Since then, the PHR has continued to be revised (based in part on feedback from the pilot). The most substantial change to date is the consistent implementation of a symbol system within the document, reflecting its use elsewhere within the LDS and within local authorities. Information on its use has been broadly circulated amongst primary care, service provider networks, and school nurses.

Bridge to Vision

The Bridge to Vision project works pan-Ayrshire to address unmet visual impairment needs in people with a learning disability. Hospital Ophthalmology staff and 23 community optometry practices across Ayrshire and Arran received training on assessing people with learning disability; practices also received a grant to purchase specialist equipment. The project employs an RNIB Development Worker to support clients by: undertaking initial assessment within the client’s home environment;

38 Millar, S. with Aitken, S. (2003) Personal Communication Passports: guidelines for Good Practice, CALL Centre, University of Edinburgh, Edinburgh

Appendix D

informing optometrists of the results; supporting clients and carers during the eye test; and writing up test outcomes in a plain-language report. This report includes any practical changes that can be made to the client’s environment or support to best meet their visual needs.

Evaluation has shown that the RNIB Development Worker has been extremely useful as a means of communicating information from optometrists to clients and carers. Positive changes to clients’ lifestyles and environments have been made as a result of recommendations in the plain-language reports. The training and pre-assessment information has supported optometrists to prepare prior to assessment and in undertaking appropriate assessments.

It is hoped that the project can be expanded to include the hearing impairment needs of people with learning disabilities and discussions with Audiology and RNID have already commenced.

Lothian special interest group

In Lothian an audiology group to facilitate joint working between the audiology service and CLDT teams has been set up. This group has membership from audiology, hearing therapy, speech and language therapy and community nursing. The group has been working together to improve communication between services and has been working on documentation to support this, e.g. ‘pathway’, referral form, leaflet.

Areas identified for future development for example include:

The role of the Community Learning Disability Nurse in audiological screening

A hyperacussis clinic. This is currently being piloted The regular review of people who have Down’s Syndrome Assessment of individuals who have profound and multiple learning

disabilities Transition from paediatric audiological services to the adult service.

Appendix E

Appendix E

People Involved with the Sub Group since group formed:

Name Designation OrganisationMrs Grace Moore, MBE (Chair) Associate Director of Health Promotion and Equalities NHS Ayrshire & ArranMs Angela Bonomy Project Manager Scottish Executive Health DepartmentMs Ann Brown Operations Manager RNID ScotlandMiss Sarah Bush Health Promotion Officer NHS Ayrshire & ArranMr Adrian Carragher Head of Audiology NHS Ayrshire & ArranMr Mike Cooper Project Manager Scottish Executive Health DepartmentMr Michael Davis Representative Scottish Council on DeafnessMrs Marjorie Douglas Speech & Language Therapist Donaldson’s CollegeMr John Gill Deaf Services & Hearing Support Team Highland CouncilMs Delia Henry Director RNID ScotlandDr John Irwin Audio Vestibular Physician NHS TaysideMs Anne Kennedy Hearing Therapist NHS LothianMs Lillian Lawson, OBE Director Scottish Council on DeafnessDr Helen Lynn Clinical Director for Learning Disabilities NHS Ayrshire & ArranMs Anne McMillan Project Manager RNIBMr Mark Mitchell Audiologist NHS GrampianMr Joseph O’Donnell Educational Audiologist Donaldson’s CollegeMiss Joanne Robertson Project Co-ordinator NHS Ayrshire & ArranDr Paddy Townsley Community Paediatrician NHS Greater Glasgow and ClydeMs Sarah Waterson Operations & Development Manager RNIBDr Maggie Watts Consultant in Public Health Medicine NHS Ayrshire & Arran

Appendix F

Appendix F

Glossary of terms

ASD Autistic Spectrum DisorderADHD Attention Deficit Hyperactivity Disorder aABR Automated Auditory Brainstem ResponseAHP Allied Health ProfessionalALD Assistive Listening DeviceALDT Adult Learning Disability TeamAMEQ Attitude, Motivation, Expectation QuestionnaireAVM Audio Vestibular MedicineAWG Audiology working groupBSL British Sign LanguageBATOD British Association of Teacher’s of the DeafCP Care Pathway/sCPD Continuous Professional DevelopmentCLDT Community Learning Disability TeamDDA Disability Discrimination ActDPOAE Distortion Product Otoacoustic EmissionENT Ear, Nose and Throat – sometimes Oto Rhino

Laryngology (ORL)GHABP Glasgow Hearing Aid Benefit ProfileGHADP Glasgow Hearing Aid Difference ProfileGHACP Glasgow Hearing Aid Carer ProfileHA Hearing AidHT Hearing TherapyICP Integrated Care Pathway/sIHR Institute of Hearing ResearchLD Learning DisabilitiesLD-DR Learning Disability Direct Referral MHAS Modernisation of Hearing and ServicesNHS National Health ServiceNDCS National Deaf Children’s SocietyOAE Otoacoustic emission OT Occupational TherapyPASS / REFER Possible results from Universal Newborn Hearing

ScreeningPDP Personal Development PlansPHIS Public Health Institute for ScotlandPTA Pure Tone Audiometry – the most common hearing

assessmentPwLD People with Learning DisabilitiesQIS Quality Improvement ScotlandREM Real Ear MeasurementRECD Real Ear to Coupler DifferenceRNIB Royal National Institute of the BlindRNID Royal National Institute for Deaf peopleSALT/ SLT Speech and Language Therapist

Appendix F

Glossary of terms

SCoD Scottish Council on DeafnessSNAP Special Needs Advocate for ParentsSATO Senior Assistant Technical OfficerTOAE Transient Evoked Otoacoustic Emission sometimes

given as TEOAEUNHS Universal Newborn Hearing Screening

Appendix G

Appendix G

REFERENCES

5 Kropka B.I., Bamford J. and Williams C. (1983) From "cabbages" to "kings" in one month: or with the deaf-blind you never know until you try. Mental Handicap, 1: 10-13

Carvill S. (2001) Sensory impairments, intellectual disability and psychiatry. Journal of Intellectual Disability Research, 45(6): 467-483

Barr O., Gilgunn J., Kane T. and Moore G. (1999) Health Screening for people with learning disabilities by a community learning disability nursing service in Northern Ireland. Journal of Advanced Nursing, 29(6): 1482-91

26 Skellington Orr, K., Leven, T., Bryan, R. and Wilson, E. (2006). Community Care and Mental Health Services for Adults with Sensory Impairment in Scotland. Edinburgh, Scottish Executive Social Research

27 Department of Health (2002) A Sign of the Times: Modernising Mental Health Services for people who are Deaf, London, The Stationery Office

28 De Feu, M. and Fergusson, K. (2003) Sensory impairment and mental health, Advances in Psychiatric Treatment, vol 9. 9, pp95-103

29 Health Education Board for Scotland (2004): D/deaf, deafblind and hard of hearing research. Edinburgh, HEBS

31 NHS Health Scotland (June 2006) Good Practice Guide on Consent for Health Professionals

34 Scottish Executive's Audiology Modernisation Advisory Group (2006) Guidance for Direct Referral of Patients to Audiology Services

36 Hindley, P. and Kitson, N. (Eds) (2000): Mental Health and Deafness, London: Whurr Publishers Limited

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