Cochelar Implants 003

Quality Standards

Cochlear implants for children and young people Guidelines for professionals working with deaf children and young people

Joint revision by: The National Deaf Children’s Society and British Cochlear Implant Group

The National Deaf Children’s Society and the British Cochlear Implant Group would like to thank Advanced Bionics (www.cochlearimplants.com), Cochlear Ltd (www.cochlear.com) and Med-El (www.medel.com) for kindly providing photographs (and permission for use) that have been used throughout this publication. We would particularly like to thank the parents, children and young people featured in these photographs and in those provided by NDCS.

Contents Statement by Susan Daniels and John Graham

5

1.

Notes to readers

6

2.

Introduction

7

3.

Children and young people – key considerations

8

3.1

Appropriate candidates

8

3.2

Adolescent programmes

8

4.

5.

Local services and support

10

4.1

Local services for deaf children and young people

10

4.2

Newborn hearing screening programme

11

4.3

The local health service

11

4.4

The local specialist education service

11

4.5

The local social care services

12

4.6

Support groups and voluntary organisations

12

Supporting the child, young person and family

13

5.1

The need for accessible information

13

5.2

Communication

14

5.3

The need for multi-disciplinary working

14

5.4

Partnership and parental responsibility

14

5.5

Involving the child in their own care

15

5.6

Involving the young person in their own care

16

5.7

Contact with peers and families

16

5.8

Children with additional complex needs

17

Quality standards and good practice guidelines: Cochlear implants for children and young people

6.

The paediatric/adolescent cochlear implant programme

18

6.1

The cochlear implant team

18

6.1.1

The audiological scientist (clinical scientist)

18

6.1.2

The ENT surgeon

19

6.1.3

The audiological physician

19

6.1.4

The speech and language therapist

19

6.1.5

The teacher of the deaf

20

6.1.6

The co-ordinator (or cochlear implant service manager)

20

6.1.7

The key (link) worker

20

6.2

Additional specialist support

21

6.3

Training requirements

21

7.

Clinical and surgical facilities and accommodation

23

7.1

Hospital and clinic accommodation

23

7.2

Audiological testing and assessment

24

7.3

Surgical equipment

24

8.

9.

The referral and selection procedure

25

8.1

25

Attendance and commitment by the child and family

Assessment for a cochlear implant

27

9.1

Prior to the appointment at the clinic

27

9.2

The process and procedures

28

9.3

Funding requirements

28

9.4

A co-ordinated approach to multi-disciplinary assessment

29

9.5

Local professionals and the assessment process

29

9.6

Assessment in the home and at school

30

9.7

The audiological assessment

30

9.8

The teacher of the deaf assessment

31

9.9

The speech, language and communication assessment

31

9.10

The medical assessment

32

9.11

CT/MRI scans

32

9.12

Ophthalmic assessment

33

9.13

BCIG and other safety guidelines

33

9.14

Pneumococcal meningitis vaccination

33

9.15

Otitis media

34

Quality standards and good practice guidelines: Cochlear implants for children and young people

10.

11.

12.

13.

The outcome of the assessment

35

10.1

Consent and confidentiality

35

10.2

Establishing funding commitment for long-term NHS care

36

10.3

Preoperative care

36

Surgery and postoperative care

38

11.1

The cochlear implant device

38

11.2

Nursing care prior to and at surgery

38

11.3

Surgery and care

38

11.4

Following surgery

39

11.5

Discomfort, unexplained changes or swelling of the surgical site

40

11.6

Contact details for support

40

11.7

Revision surgery

40

11.8

Device failure

40

Programming, follow-up care and support

42

12.1

Prior to programming

42

12.2

Fitting the implant device and programming

42

12.3

Records of measurements

42

12.4

Specialist contact sessions with the child, family and local professionals

43

Ongoing evaluation of benefit

44

13.1

Habilitation for the young person

44

13.2

Cochlear implant equipment

45

13.3

Contralateral hearing aid provision

45

13.4

Personal FM equipment

46

13.4.1 Routine maintenance and monitoring

47

13.4.2 Assistive devices, leads and accessories

47

13.5

Battery safety

47

13.6

Insurance and replacement guidelines

47

13.7

New developments

48

Quality standards and good practice guidelines: Cochlear implants for children and young people

14.

15.

Transfer of care

49

14.1

Transfer to an alternative paediatric or adolescent service

49

14.2

Transfer to adult care

49

Service planning, evaluation and audit

52

15.1

52

Complaints procedure

16.

Acknowledgements

53

17.

Appendix 1

54

Alphabetical listing of key professionals working with the child, family and cochlear implant team

18.

References

Quality standards and good practice guidelines: Cochlear implants for children and young people

55

Driving up standards for deaf children and young people with a cochlear implant The National Deaf Children’s Society (NDCS) and the British Cochlear Implant Group (BCIG) have jointly produced Quality standards and good practice guidelines in cochlear implants for children and young people. The aim of this joint review by NDCS and BCIG is to define good practice and drive up standards of care for children and young people who are considered for, or who receive, a cochlear implant. We believe that this document provides a valuable tool and reference point for all service providers, purchasers and commissioners of services to help them to deliver quality care for deaf children and young people with a cochlear implant. Its aim is to give busy professionals the framework in which to provide the best possible support and long-term care. We are proud that these guidelines have been developed through a strong partnership between NDCS and BCIG. We would like to thank everyone involved in the development of this work. The document has had crucial input from cochlear implant teams across the UK, audiology and education services, community professionals, parents and lay people involved with deaf children.

Susan Daniels, NDCS Chief Executive

John Graham, BCIG Chairman

April 2005

The National Deaf Children's Society is the only UK organisation solely dedicated to the support of deaf children, deaf young people, their families, carers and professionals working with them.

The British Cochlear Implant Group is committed to the enhancement and promotion of the best possible quality of service provision for children, young people and adults who receive cochlear implants in the UK, and welcomes with great enthusiasm the opportunity to work with NDCS in the publication of this document.

Quality standards and good practice guidelines: Cochlear implants for children and young people

5

6

1.

Notes to reader

1.1

We use the term ‘child’ or ’children’ to include babies and younger children, and ‘young person’ to define older children and young adults. However, the term ‘child’ or ’children’ is used to include young people, unless specifically stated otherwise.

1.2

The term ‘young person/people’ is used to identify those most likely to benefit from an adolescent programme.

1.3

We use the word ‘deaf’ to cover all types of deafness, including temporary deafness such as glue ear.

1.4

The phrase ‘all deaf children’ includes children who have additional needs, who are from minority ethnic communities or who are from families that find it difficult to gain access to services.

1.5

We use the term 'parent(s)' and 'family' to include the child's carer with parental responsibility. If the child is a ward of court, or in the care of a social services department, appropriate permission must be sought before medical or surgical procedures take place.

1.6

The document is intended for use by all cochlear implant programmes throughout the UK (however, not all references and/or legislation cited in the text may be relevant).

1.7

The abbreviation is used to denote factors which define a quality standard that can be used in a clinical audit of services.

QS

Quality standards and good practice guidelines: Cochlear implants for children and young people

2.

Introduction This document has been produced in partnership between The National Deaf Children’s Society (NDCS) and the British Cochlear Implant Group (BCIG). It replaces Quality Standards in Paediatric Audiology: cochlear implants for children, Volume III, June 1999 (which superseded the original BCIG document, 1994). This revision took place following consultation with paediatric and adolescent cochlear implant teams, other interested professionals, parents and young people across the UK. More than two children a day in the UK are born with significant permanent hearing loss (Fortnum et al, 2001; Hall, 2004). A study by Fortnum et al (2001) estimated that a further 0.6-0.9 per 1000 children will develop hearing loss by 10 years of age (due to illness, progressive hearing loss or late onset of deafness). Of the 840 children born deaf each year (Summerfield & Marshall, 1995) more than one quarter will receive a cochlear implant in their early years. Early identification and appropriate management lessens the impact of hearing loss on the child, the child’s family, and on society (Kuhl et al, 1992; Markides, 1986; Meadow-Orlans, 1987; Ramkalawan & Davis, 1992; Yoshinaga-Itano, 1998; Sharma et al, 2002; McConkey Robbins et al, 2004). Providing a child with a cochlear implant requires a dedicated multi-disciplinary team who understand the complex needs of each child and the impact any intervention will have. The paediatric and, where relevant, the adolescent team must be able to assess their individual needs, be fully conversant with specialised equipment and be capable of providing long-term habilitative support to the child and to their family until they transfer to an adult cochlear implant programme. The provision of a cochlear implant requires NHS commitment of life-long care for the user. We believe that parents play a central role in the care of their deaf child, and it is crucial for implant teams and local services to work closely with them and with the child and/or young person and involve them in every step of the procedure. Optimal habilitation for the child can only occur when parents are considered and valued as equal members of the team. All services should work with and encourage young people to be fully involved in decisions relating to their own care and in their long-term care plan. This document identifies guidelines for good practice that will help service professionals to maintain and improve standards and quality service provision for deaf children and young people. It will also provide purchasers and commissioners with clear and balanced guidance on the different processes and procedures involved when commissioning cochlear implantation services.

Quality standards and good practice guidelines: Cochlear implants for children and young people

7

3.

Children and young people – key considerations Providing a child with a cochlear implant involves the surgical insertion of an electrode array into the cochlea to provide direct stimulation of the auditory nerve. It can provide severe to profoundly deaf children with a sensation of hearing and, through a careful and consistent process of auditory habilitation, many can achieve functional spoken language and a greater understanding of environmental sounds.

3.1

Appropriate candidates The referral criteria for cochlear implantation are constantly evolving. A cochlear implant may be a suitable procedure for a young child who has received very limited or no benefit from hearing aids. In addition, older children and young people with a severe to profound hearing loss, and those with progressive and sudden onset hearing loss, who show evidence of using sound in their daily lives, may also be considered. Around 40% of deaf children will have additional needs, such as ophthalmic problems (Guy et al, 2003), or developmental delay. Deaf children with complex needs, who meet the referral criteria, should be considered for cochlear implantation assessment. A cochlear implant should only be offered following efficient and effective multi-disciplinary assessment by the cochlear implant team working with local services. This detailed assessment will usually take some weeks to complete. However, in certain circumstances, such as following meningitis and where there is a risk of ossification this period of time is likely to be less.

3.2

Adolescent programmes ‘Individual specialist disciplines … should provide specifically for the needs of young people, and, where numbers justify, develop a separate young people’s service. They should also ensure that social, psychological, education and employment needs are addressed.’ (Department of Health, 2003) Cochlear implantation is no longer in its infancy in the UK and children who received a cochlear implant some years ago are now young people. As a result some teams have developed an independent ‘adolescent’ programme, or service within their paediatric programme, to cater for older children and teenagers who are still in full time education. Young people will need a smooth transfer from the paediatric/adolescent programme to the adult programme (see ‘transfer of care’, 14.2, page 49), with one-to-one intervention provided outside the paediatric environment. This specialist service should establish close liaison with local education and other services.

8

Quality standards and good practice guidelines: Cochlear implants for children and young people

Quality standards and good practice guidelines: Cochlear implants for children and young people

9

4.

Local services and support ‘At any stage, the care pathway may need to link in social care, education and other services. It is essential that robust relationships and arrangements are developed within and between organisations to ensure that the child’s experience is as ‘joined up’ and seamless as possible’ (Department of Health, 2003).

4.1

Local services for deaf children and young people The ‘local service’ refers to those services (health, education or social care) based in the child’s local hospital, school or community, who will liaise with the cochlear implant programme to provide day-to-day support. This would include specialist education and therapy services. The care pathway for a deaf child means that their first professional support is likely to be from the ‘local health, education and/or social care services’. It is important that purchasers and commissioners of NHS cochlear implant services recognise this and that the management of a child involves integrated multi-disciplinary care and support.

01 Once a child has been identified as having a permanent

QS

hearing loss the assessment targets outlined in the NDCS Quality Standards in Paediatric Audiology Volume IV (under revision) and NDCS Quality Standards in the Early Years (2002) will need to apply. Local services should ensure that the family is given the opportunity to discuss and explore issues relating to their child’s deafness. They should: • promote equal opportunities for all children supported by the service • ensure the child has every opportunity to develop their full potential • raise the level of awareness of deafness with teachers and peer groups to maximise the child’s potential. Local services should be fully conversant with cochlear implant referral criteria and current thinking on policy and procedures. Following implantation, local services will need to work closely with the cochlear implant programme to ensure effective ongoing habilitation for the child.

02 Local and specialist multi-disciplinary teams should work

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together to ensure a co-ordinated and efficient approach to each child’s assessment and ongoing care.

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Quality standards and good practice guidelines: Cochlear implants for children and young people

Families with a disabled child can gain valuable support from other parents with a disabled child (see ‘contact with peers and families, 5.7, page 16). Therefore, it is important that local services provide families with the information and opportunities they need to make contact with other families with a deaf child.

4.2

Newborn hearing screening programme Newborn hearing screening should be fully implemented throughout the UK by the end of 2005 (see www.nhsp.info). Newborn babies will have their hearing screened during the first few weeks after birth. If a baby does not show a clear response to this screen they will be referred to the local audiology service for assessment. Babies born with congenital or perinatal deafness will be referred from screen to audiology in the first days of life, although the hearing loss will take longer to confirm. Newborn hearing screening will make it possible for families and professionals to work together to take very early action on behalf of the child and to intervene before language and communication deficit has become established.

4.3

The local health service Local audiological and medical services are responsible for the assessment, diagnosis and audiological management of the child. The audiology service will manage and treat any middle ear pathologies, in partnership with the local ENT service. They should work closely with the family and other local education and health services to ensure that suitable support is given, appropriate hearing aids are fitted and maintained, and that the hearing aids are effectively evaluated in use.

4.4

The local specialist education service Specialist education services (for example teacher of the deaf, educational audiologist, etc) will work with the child and family from the point of confirmation of deafness. They will also work closely with the local health services in providing multi-disciplinary advice, care and support to the family. Prior to a child having an implant, the local education service should support hearing aid use in order to assess functional hearing, maximise residual hearing and develop communication. They will need to provide specialist equipment for the child to use at home and at school, eg personal FM system, and to ensure that all equipment has the appropriate accessories and meets the individual needs of the child.

Quality standards and good practice guidelines: Cochlear implants for children and young people

11

4.5

The local social care services The role of the social care services team in relation to deaf children and their families is identified in Deaf Children: positive practice standards in social services (Association of Directors of Social Services et al, 2002). It is important that a working partnership exists between social care, health and education services to improve deaf children’s assessment for communication equipment and its provision (ADSS et al, Standard 5.3, 2002). (This document was written in relation to services specific to England, it is largely applicable to Wales but not to Northern Ireland or Scotland where different legislation may apply.)

4.6

Support groups and voluntary organisations Support groups and voluntary organisations are able to provide parents with support and guidance on all aspects of hearing loss. They can provide useful information on new and changing technological developments for the deaf child, including information relating to cochlear implants. The cochlear implant programme should provide families with written details of how to contact local and national support groups, such as the Cochlear Implant Children’s Support group (CICS) at www.cicsgroup.org.uk, NDCS at www.ndcs.org.uk and local DCS group, etc.

03 Information about voluntary sector services must be given to

QS

the family at the time of assessment, at key stages throughout the child’s life, and when requested by the family

12

Quality standards and good practice guidelines: Cochlear implants for children and young people

5.

Supporting the child, young person and family ‘Children and young people should receive care that is integrated and coordinated around their particular needs, and the needs of their family. They, and their parents, should be treated with respect, and should be given support and information to enable them to understand and cope with the illness or injury, and the treatment needed. They should be encouraged to be active partners in decisions about their health and care, and, where possible, be able to exercise choice’ (Department of Health, 2003). In order for parents to make an informed choice it is essential that they be fully informed with regard to the health and educational development of their child. The implant team should ensure that the child and family understand the nature and cause of the child’s hearing loss, as well as the management options available to them. Services will need to obtain appropriate consent prior to any intervention. They will also need to obtain consent before passing details of the care of the child or young person to others (see section on ‘consent and confidentiality’, 10.1, page 35).

5.1

The need for accessible information Parents and young people need balanced and unbiased information so that they can make an informed choice. Information should be clear, accurate and accessible, and provided in spoken and written form, for example leaflets that can be taken away (Department of Health, 2003). All information should be available in other languages, including sign language, and other formats such as large print, audio, videotape or Braille. The cochlear implant team will need to provide information on: • the assessment process • the surgical procedure • realistic outcome targets and benefits • the need for long-term habilitative care with implantation • types (and choices) of equipment available • communication modes available after implantation.

04 Families and young people must have equal access to

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information in their preferred language.

Quality standards and good practice guidelines: Cochlear implants for children and young people

13

5.2

Communication 05 The cochlear implant team must provide the family and/or

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young person with information on the audiological and communicative developmental needs so that they can make an informed decision about cochlear implantation. All members of the team should be aware of the principles of family-friendly services (for example, Baguley et al, 2000) and these principles should be reflected in the written protocols as well as the clinical delivery of services. The cochlear implant team and local professionals will need to work with the family in developing skills to help their child, over time, to develop listening and spoken language skills. Those involved in the cochlear implant team should be able to communicate effectively and sensitively with the deaf child, young person and the family. This should include signing if this is the most appropriate communication method.

06 Sign language and/or spoken language interpreter(s) must be

QS 5.3

provided for all visits to the hospital or clinic, as required.

The need for multi-disciplinary working (see Section 9.4, page 29) ‘The evidence strongly favours a holistic health-promoting approach, which crosses agencies and disciplines, rather than a narrow defect-detecting programme.’ (Hall & Elliman, 2002). Children, young people and parents are part of the multi-disciplinary team and they will be involved with a number of professionals from different disciplines. Good multi-disciplinary working can effectively reduce disruption to their family life, and good communication between personnel within the team will help to establish their needs allowing them to be addressed holistically. Clear communication and co-ordination between agencies should reduce the number of meetings and appointments that parents have to attend, for example by arranging joint visits

5.4

Partnership and parental responsibility Parents have a pivotal role to play in the assessment and influence of their child’s progress and the needs of their child, and the implant team has a duty to work in partnership with them and to provide the support they need to carry out this role of care and responsibility.

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Quality standards and good practice guidelines: Cochlear implants for children and young people

With support from local services, the implant team should work with parents and children to ensure they understand how important it is that the implant device is worn consistently and the equipment maintained in good working order. The implant team will need to work with them to ensure they understand they have a responsibility to: • follow through with daily practice of therapy goals • attend the cochlear implant clinic for all appointments, both pre- and post-surgery and until transfer to the adult service • prepare the child for hospital procedures • ensure consistent and effective use of the implant and related equipment • provide effective feedback on their child’s or their own development • monitor, care and maintain the equipment and surgical site on a daily basis • commit to a programme of aural habilitation.

5.5

Involving the child in their own care Children have a right to be involved in decisions about their own care (UN Convention for the Rights of the Child, 1989). It is essential that parents and professionals providing services and support to children seek, wherever possible, to obtain the views of the child. Where a child is considered to be old enough to make an informed choice their consent should be obtained, and their views should be respected. Communication and information should be culturally appropriate, age appropriate and at a level, and by means, best suited to the child’s stage of development and degree of understanding (Department of Health, 2003).

Quality standards and good practice guidelines: Cochlear implants for children and young people

15

5.6

Involving the young person in their own care Young people must be fully involved in their own care, in the decision making process, and in the development plan for their long-term care. They need to fully understand the implications of having a cochlear implant before they consent to surgery. Young people should be provided with the necessary encouragement to take full responsibility for their own care (Department of Health, 2002). Regardless of whether the young person is cared for by a paediatric or adolescent cochlear implant programme, it is important that they are given culturally appropriate and age-related support and information.

5.7

Contact with peers and families Parents, children and young people value contact with other families in order to share experiences and learn from one another (Dettman et al, 1996; McCormick & Archbold, 2003). Such shared experiences will be very valuable to families during the assessment and decision making phase. However, peer support following surgery and during the ongoing habilitation of the child is equally important. The implant team should work with local services, support groups and voluntary organisations, to ensure this is facilitated and proves a useful experience for the child and family.

07 It is the responsibility of the implant programme to work with

QS

local services to ensure there are established and accessible opportunities for the child and family to meet others, with and without an implant, during the assessment phase. Finding appropriate families and peers will take time and careful consideration and requires the full consent of both parties. Once a contact family has been identified and a meeting arranged, the implant programme should not have any further involvement in the discussions between the families unless invited. Patient confidentiality must always be observed and respected. Implant teams should run ‘family days’. This will enable them to meet families who are considering an implant for their child, as well as other families with a child who already has a cochlear implant. Young people should be offered contact with other deaf young people with and without a cochlear implant, and given details of internet-based support groups, such as www.ci4-teenz.com.

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Quality standards and good practice guidelines: Cochlear implants for children and young people

5.8

Children with additional/complex needs ‘Many children have complex needs that cross speciality boundaries and they will need access to a whole range of services. Staff need to collaborate closely to ensure that children and their families are receiving consistent and co-ordinated support, and the NHS locally will need to design services to achieve this’ (Department of Health, 2002; 2003). Cochlear implant staff, and ideally all those working in local health and education services, should have the knowledge and expertise that enables them to work effectively with children with a range of complex needs, in addition to hearing loss. They need to understand the referral pathways to other specialised teams so that the child receives appropriate habilitation to meet their individual needs. Strategies and protocols should be developed to provide seamless service provision. The impact of hearing loss on the child and family should be viewed in the context of the child’s whole development, including that of health, educational and social care development. It is the responsibility of both health and education to ensure that all staff involved with a deaf child with additional needs are fully informed and have a full understanding of the good practice guidelines produced by other agencies and organisations supporting such children.

Quality standards and good practice guidelines: Cochlear implants for children and young people

17

6.

The paediatric/adolescent cochlear implant programme The ‘cochlear implant programme (or service)’ refers to the team responsible for assessment, surgery and habilitation of the child being considered for or with a cochlear implant. This team may not be based in the child’s local hospital or community and may be a tertiary centre. The service, working in conjunction with the child’s local services, is responsible for advice and coordination of the child’s care.

6.1

The cochlear implant team ‘To deliver hospital services that meet the needs of children, young people and their parents, and provide effective and safe care, through appropriately trained and skilled staff working in suitable, child-friendly, and safe environments’ (Department of Health, 2003). Providing a cochlear implant service involves the formation of a skilled, multidisciplinary team that works closely with the child, their family and local professionals who work with the child. Team members need to allow sufficient time to collaborate on joint working and planning, and to engage in training. This will ensure the development of true multi-, inter- and intradisciplinary working and shared clinical knowledge. New personnel will need to be given training, supervision and support by relevant experienced members of the cochlear implant team. Key members of the team are:

6.1.1 The audiological scientist (clinical scientist): 08 Audiological support and assessment must be undertaken by

QS

staff with the necessary skills to perform and interpret testing. Key scientific staff must be appropriately trained at postgraduate level (for example MSc, or equivalent in audiology, supplemented by suitably assessed practical experience) and state registered with the relevant body. No audiological member of the team with less than 2 years experience in paediatric audiology should work unsupervised. The audiological scientist will review the child's hearing aid fitting and perform detailed behavioural hearing assessments and objective hearing assessments where necessary. They are usually responsible for testing the implanted device during surgery. During the habilitation period, to ensure that optimum fitting and use of the device is maintained, the audiological scientist will establish thresholds and comfort levels of stimulation and, in consultation with other members of the implant team, select appropriate speech processing strategies and parameters. The audiological scientist will be responsible for ongoing

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Quality standards and good practice guidelines: Cochlear implants for children and young people

adjustments and maintenance and for ensuring the child and family understand how the cochlear implant works and is used.

6.1.2 The ENT surgeon: 09 The ENT surgeon will have an FRCS qualification. They will be

QS

a NHS consultant paediatric otolaryngologist/otologist with appropriate accreditation and training in implant surgery. They will have had a minimum of two years experience in adult cochlear implant surgery before undertaking paediatric cochlear implant surgery. The surgeon, in collaboration with the consultant anaesthetist, is responsible for assessing the child's medical fitness for cochlear implant surgery. The surgeon will perform the cochlear implant surgery and with the anaesthetist will have overall responsibility for the child’s medical and clinical care.

6.1.3 The audiological physician: In some centres the audiological physician may carry out some of the medical and audiological care of the child (Papsin et al, 1997).

10 The audiological physician must have the necessary skills to

QS

carry out this work and be on the audiological medicine specialist register. They should be qualified to MSc in audiological medicine. They must be trained and have experience of working with children.

6.1.4 The speech and language therapist (SLT): 11 The SLT must have a degree and licence to practice, including

QS

registration with The Royal College of Speech and Language Therapists and Health Professional Council. The SLT must have two years generalist speech and language therapy experience (RCSLT, 1997), and have at least two year’s experience of working with deaf children. They must have attended relevant postgraduate training. The SLT will assess and evaluate the child's communication development and competence, including their speech and language skills and social development. This will be in collaboration with other team members. They will work closely with the rest of the team, the parents and local professionals in advising and reviewing the implementation of appropriate communication goals (Implant Centre Speech and Language Therapists, 1998).

Quality standards and good practice guidelines: Cochlear implants for children and young people

19

6.1.5 The teacher of the deaf (TOD): 12 The TOD will have a DfES QTS qualification and a mandatory

QS

qualification as a TOD. They will have at least 2 years experience of teaching deaf children. Experience in a variety of educational settings, to include pre-school peripatetic work with young children and their families, is required. It is desirable that they have further relevant post-qualification training The TOD will assess and evaluate a child’s functional hearing aid use, listening and communication skills in collaboration with other team members. The TOD will work closely with the team, family and local professionals in identifying and advising and reviewing the implementation of appropriate auditory and communication goals. They will liaise between the cochlear implant team, the child’s home and school to ensure consistent sharing of information during the assessment, surgery, device programming and rehabilitation processes (ICTOD, 2003).

6.1.6 The co-coordinator (or cochlear implant service manager): The co-ordinator will have a high degree of organisational, leadership and professional skills. They will ensure that appropriate services are provided for each child throughout all phases of the cochlear implant process and procedure. It is the co-ordinator’s responsibility to ensure that any recommendations are made to the child’s local services to establish and/or maintain quality provision of care.

6.1.7 The key (link) worker: 13 ‘One professional should take on the role of key worker in

QS

order to provide a single point of contact and co-ordination for the family’s care package’ (Hall & Elliman, 2002). The cochlear implant team should assign each child with a key (sometimes known as the link) worker who will work with the child's family, co-ordinating their care and acting as their first point of contact, and who will ensure there is effective contact with the child’s local health and education professionals. The family must know who their key worker is and have the ability to change their key worker if they so desire. The key worker must be accessible to the child and family and be flexible in their approach to their needs. It is their responsibility to ensure that there is continuity in the information provided to all those involved with the child.

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Quality standards and good practice guidelines: Cochlear implants for children and young people

6.2

Additional specialist support (see Appendix 1) In addition to the expertise of the core team, and to local services, there may be a need for others with specific expertise to be involved in the care of the child. Additional support will depend on the individual needs of the child. Wherever possible those providing additional support should have experience of working with deaf children and their families. Children with multiple sensory impairment may need further specialist input to meet their complex needs.

6.3

Training requirements ‘All staff treating or caring for children and young people should have appropriate training, and should undergo regular updating and refreshment of skills. This training should cover both the technical clinical skills and the personal and communication skills necessary to treat children and their parents’ (Department of Health, 2003).

Quality standards and good practice guidelines: Cochlear implants for children and young people

21

Children should receive appropriate high quality, evidence-based care, developed through clinical governance and delivered by staff with the right skills. Experienced members of the team have a duty to provide new personnel with appropriate training, supervision and support. Training needs should be identified and strategies in place to support and develop skills that will ultimately improve overall performance of each team member and the team as a whole, as well as achieve and maintain a quality service to deaf children. To ensure a responsive child and family-centred service, training in issues relating to childhood deafness, deaf awareness, sign language and finger spelling is essential for all key staff. The implant team should be trained in the necessary communication skills to enable them to work effectively with children, young people and families and to support them in being active partners in decision-making. Staff should also receive training in disability and cultural awareness, and customer care including listening skills. Text telephone facilities should be available and training given in their use.

14 It is essential that there are clear procedures in place

QS

for monitoring the professional performance of implant team members.

Staff induction must include attendance at team meetings, multi-disciplinary clinics, surgical procedures, specialist assessment appointments and joint working with experienced staff. All staff working within the cochlear implant programme must attend recognised skill appropriate training, and have an agreed plan for continued professional development and skills. Joint training of staff from different disciplines should be encouraged, as this can lead to co-ordinated services and well-informed personnel.

22

Quality standards and good practice guidelines: Cochlear implants for children and young people

7.

Clinical and surgical facilities and accommodation ‘Care will be provided in an appropriate location and in an environment that is safe and well suited to the age and stage of development of the child or young person, that is, child-friendly hospitals and hospitals that are safe and healthy places for children’ (Department of Health, 2003) Care should be delivered in a safe, suitable and child-friendly environment (NHS Estates,1994, 2003; 2004). They should have a good understanding of what it means to be cared for in a child and family-friendly environment, following the philosophy of Baguley et al (2000).

7.1

Hospital and clinic accommodation 15 The multi-disciplinary clinic must take place in a paediatric

QS

hospital or other suitable paediatric setting that conforms to the Hospital Standard: Quality of setting and environment (Department of Health, 2003), and to Children’s Surgery – a First Class Service (Royal College of Surgeons, 2000), and to the British Association of Otorhinolaryngologists/Head and Neck Surgeons guidance. Facilities for children should be accessible, safe, suitable, and family friendly, and located either within the cochlear implant centre or within the hospital's paediatric ENT/audiology department. In clinics where children are seen alongside adults there should be some geographical separation, for example through partitioning waiting areas (Department of Health, 2003). Careful consideration must be given to the needs of young people.

16 Children should not be cared for in adult clinics or on adult

QS

wards, but in facilities that are appropriate for their age and stage of development. Ideally, there should be separate ‘adolescent’ units, but where this is not possible, separate sections within the paediatric unit should be made available to meet their needs. Facilities will need to be made available for parents and siblings, with suitable provision for overnight stay. These facilities should include access to meals and relaxation, and must respect the privacy of parents.

Quality standards and good practice guidelines: Cochlear implants for children and young people

23

7.2

Audiological testing and assessment To assess children for a cochlear implant, the following will need to be available: • tympanometry • pure tone, warble tone and visual response audiometry (including insert earphones) • speech discrimination assessment • objective test measures, including otoacoustic emissions, auditory brainstem evoked response (ABR), electrical ABR, neural response telemetry • real ear in-situ hearing aid measurement • cochlear implant processor programming equipment.

17 Audiological testing should be performed in soundproofed

QS

accommodation to BS EN ISO 8253-1 (1998) and BS EN ISO 8253 - 2 (1998) standards for acoustic test methods suitable for children. All equipment must be calibrated at least annually using acceptable methods on equipment whose own calibration is traceable to nationally recognised standards, in accordance with BS EN ISO 8253-1 (1998).

7.3

Surgical equipment Equipment used for otological surgery should be appropriate and of the highest quality. In addition to routinely used otological equipment, an appropriate micro drill system is needed. Backup systems must be immediately available for all essential equipment and drills.

24

Quality standards and good practice guidelines: Cochlear implants for children and young people

8.

The referral and selection procedure The referral criteria should be regularly reviewed by cochlear implant teams in line with published research and identified good practice in the field. The implant team should provide local services with a summary of the criteria for referral to their programme and an assessment protocol. Local audiology and ENT services should be familiar with the routes of access to the cochlear implant programme and be aware of the referral criteria. Prior to referring a child for assessment, the local audiology service should ensure that the child and family understand that a cochlear implant is not a suitable procedure for every child. In the case of sudden onset of deafness, for example following meningitis, or where deafness has progressed rapidly, the time taken for the referral procedure and assessment may need to be shortened. In order for a child to be considered for assessment, a written letter of referral from the consultant otolaryngologist or audiological physician at the child’s local service, should be sent to the consultant ENT surgeon or the coordinator of the cochlear implant programme. Occasionally referrals may be made by the child’s GP, a paediatrician or by a senior clinical scientist. The referral should include all relevant medical and audiological details.

18 A reply will be sent to the referrer within 2 weeks to confirm

QS

acceptance of a referral.

The cochlear implant team will send information brochures to the child's family within 3 weeks of the receipt of the referral. If for any reason a referral is deemed inappropriate the implant team will send the referrer an explanatory letter within 2 weeks of receipt of referral. The referrer has a responsibility to pass such information on to the family as a priority.

The cochlear implant service will need to liaise with the purchaser to ensure that appropriate funding is in place.

8.1

Attendance and commitment by the child and family It is important for the cochlear implant team to ensure that the family have realistic expectations of their child’s audiological, speech and language, educational and general development, and the level of impact that a cochlear implant system may have on these. As part of the assessment process, the child and family must understand that they will be expected to attend the hospital or clinic for regular appointments as part of the assessment, the surgical intervention and followup care, and for long-term habilitation. The family need to be committed to

Quality standards and good practice guidelines: Cochlear implants for children and young people

25

encouraging the child to use their speech processor consistently during home, social and educational activities and take responsibility for daily checking and maintenance of the system. It is crucial that parents and young people understand that they have a responsibility to report and where relevant take action when any problems occur, such as swelling of the surgical site, or problems with the speech processor. Such incidences could result in the need to attend the cochlear implant centre, hospital outpatient department, or their GP, at short notice for treatment.

26

Quality standards and good practice guidelines: Cochlear implants for children and young people

9.

Assessment for a cochlear implant The cochlear implant programme, throughout all aspects of service delivery, should work within the aims and objectives of Getting the right start: National Service Framework for Children, Standard for Hospital Services (Department of Health, 2003), and to the aims and objectives of the cochlear implant team’s employing trust.

19 The NHS quality standards for outpatient clinic consultation

QS

waiting times should be adhered to for children who are referred for cochlear implant assessment. Once a child has been referred for assessment, the implant team will gather information from the child's local health and education services. In order for the assessment to be comprehensive and appropriate this information should be received before the assessment takes place. Information will need to include: • the child’s medical history (including the full developmental history and identification of any additional disabilities) • their history of hearing loss, including aetiology (see BAAP/BACDA guidelines, available from: www.baap.org.uk/Guidelines/guidelines.html, www.bacda.org.uk/ or www.nhsp.info/ • the results of all audiological assessments • type of hearing aids, and their use (previous and current) • the communication method(s) used, for both the child and the family/carer including sign language and other spoken language needs • their speech and language development • their educational support and placement • the support that parents and carers have had and are being given.

The following sections (9.1 to 9.12) describe the assessment procedure, but the order of procedure may vary.

9.1

Prior to the appointment at the clinic (see ‘supporting the child, young person and family’, Section 5, pages 13-17) Parents need clear information about their child’s audiological and communication needs to enable them to make an informed decision about whether a cochlear implant, or alternative provision, is the most appropriate intervention.

Quality standards and good practice guidelines: Cochlear implants for children and young people

27

As soon as the child has been accepted for assessment, the team should provide them with written information on cochlear implant devices, on the assessment procedure and on the tests that may be carried out. Accessible information must be provided.

9.2

The process and procedures The cochlear implant team has a duty to ensure that the child and family, and all those working with the child, are fully involved in the assessment and decision making process. As part of the assessment, the child and family must be given realistic expectations of the expected outcomes with a cochlear implant. To enable the cochlear implant service to provide a comprehensive assessment, a number of different assessments will be carried out which may take some time to complete. Parents should be made aware of how frequently their child will need to attend appointments if they proceed to a cochlear implant.

20 The initial appointment to begin the assessment process must

QS 9.3

be undertaken within 13 weeks of referral.

Funding requirements There is a clinical need for a timely and efficient assessment for a child who is being considered for a cochlear implant. Clinical evidence (McConkey Robbins et al, 2004) suggests that performing implantation in children with profound hearing loss at the youngest age possible allows the best opportunity for them to acquire communication skills that approximate those of their normally hearing peers.

21 Authorities responsible for funding cochlear implant provision

QS

must agree funding for the initial cochlear implant clinic visit within 4 weeks of receiving a request for funding from the cochlear implant centre.

Authorities must also agree to fund the further assessment, the surgery and habilitation, without delay, if the cochlear implant programme recommends implantation as an appropriate intervention for the child. Where there is a risk of ossification of the cochlea and where there is clear medical opinion that bilateral implantation would be appropriate, additional funding for bilateral implantation should be made available.

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Quality standards and good practice guidelines: Cochlear implants for children and young people

9.4

A co-ordinated approach to multi-disciplinary assessments (see ‘the need for multi-disciplinary working’, Section 5.3, page 14) A co-ordinated approach will help to reduce disruption to family life and avoid duplication of hospital appointments. Joint appointments should be arranged whenever possible. There should be effective liaison with other specialist paediatric multidisciplinary teams, so that children attending other clinics at the same hospital can have linked appointments wherever possible (Department of Health, 2003). This approach will ensure that all members of the multidisciplinary team, including the child and family, share information and outcomes, and avoid duplication of case history and information gathering. The cochlear implant team will need to obtain baseline measures of speech production, speech perception and language and communication skills. Some baseline measures will be made in educational settings and social situations.

22 Multi-disciplinary assessment of the child by the implant team

QS

must include information on a range of areas including:

•

speech and language and communication development

•

play, early social skills and emotional development

•

hearing aid use and benefit.

Assessments should include the use of parent observations, the development and progress of their child, and the impact of their child’s aiding on these. They should be audio and video recorded, with consent.

23 To ensure equal access to information, spoken and/or sign

QS 9.5

language interpreters must be provided when required.

Local professionals and the assessment process In order to support a child and their family effectively during the assessment period, local education and health professionals will need to be given detailed information by the cochlear implant programme. As the decision to provide a cochlear implant has long-term impact, it is important that all local carers contribute to the assessment procedure. This collaboration will establish a basis for future co-operative relationships.

Quality standards and good practice guidelines: Cochlear implants for children and young people

29

9.6

Assessments in the home and at school Cochlear implant team members (such as the TOD, SLT) will visit the child’s home and education establishment, based on individual need, in order to: • provide detailed information about cochlear implants in children including the range of possible outcomes, alternative forms of management, and detailed safety and user guidelines • discuss expectations with the family, so that expectations of their child's development with a cochlear implant are realistic • emphasise the nature of the commitment required, particularly from the child's family, teachers and local support services • evaluate the child's general development and communicative, social and learning style in everyday situations • evaluation of functional listening skills • offer contact with other deaf children (with and without an implant) and their families • establish links with local professionals responsible for providing support for the child, both pre and post cochlear implant • review the child's educational support • evaluate the effectiveness of parental support.

Such visits will help all those involved with the child to understand the: • potential offered by cochlear implantation • issues concerning the possible social and emotional impact of the device • communication issues • education provision issues • long-term technical support and care required.

9.7

The audiological assessment (see ‘audiological testing and assessment’, 7.2, page 24) As part of the assessment, the audiological scientist will evaluate the child’s hearing status, and their hearing aid provision, which may require audiological modifications to hearing aids and earmoulds. It may be necessary to undertake further audiological and functional assessments with revised hearing aids and earmoulds to maintain consistent hearing aid use. All tests performed on the child must comply with the current version of the British Society of Audiology (2003) recommended procedures* and meet the guidelines laid down in the current version of the NDCS Quality Standards in Paediatric Audiology (under review).

30

Quality standards and good practice guidelines: Cochlear implants for children and young people

Because of changes to specifications and the rapid development of new technology, equipment should ideally be no more than five years old, with a 5-year rolling programme of replacement.

24 Testing should be carried out to professionally accepted

QS

protocols and procedures (British Society of Audiology, 2003; BS EN ISO 8253-1 and 8253-2, 1998)*. Audiological testing should be performed in audiometric test rooms to (BS EN ISO 8253-1, 1998) standards for acoustic testing methods suitable for children*. All equipment should be calibrated at least annually using acceptable methods on equipment whose own calibration is traceable to national standards (in accordance with BS EN ISO 8253-1, 1998)*.

Accommodation must conform to standards outlined in NHS Estates (2003; 2004)*. Ideally, there should be a 5-year rolling programme of replacement of audiological test equipment.

To support behavioural assessment of the child’s auditory function the cochlear implant team will perform auditory brainstem response testing if required. The child’s ability to be able to participate behaviourally in the future programming of the speech processor will also be assessed.

9.8

The teacher of the deaf assessment In liaison with the cochlear implant team, the family and local professionals, the TOD will assess management of amplification, functional use of hearing and communication skills. This may include parent and professional reports, direct observation and use of more formal measures. The assessments may be undertaken in the home, pre-school and/or educational settings. This will involve close liaison with local education services relating to the child’s educational needs, progress and support requirements.

9.9

The speech, language and communication assessment The assessment of communication skills and the development of spoken language may take the form of observation, subjective description and objective evaluation of hearing, spoken and sign language development. The assessment procedure will take into account the developmental age, hearing

Quality standards and good practice guidelines: Cochlear implants for children and young people

31

status and case history of the child, and should include receptive and expressive skills in spoken, signed and written language form including: • pre-verbal skills • comprehension • social skills • semantic and pragmatic aspects of communication • vocabulary • syntactic analysis • phonetic and phonological analysis • airstream mechanisms • voice • resonance.

9.10 The medical assessment The child's general medical health will be assessed and taken into consideration when making a decision to offer a cochlear implant. If the referring team has not already carried them out, tests to establish the aetiology of the child's deafness may be requested by the clinician. Assessments, including developmental assessment and identification of additional disabilities will be requested and take place under the supervision of the ENT surgeon or audiological physician. In accordance with British Association of Audiological Physicians (BAAP) policy document (1990) assessment will be carried out, where appropriate, by a cardiologist, paediatrician and other specialists.

9.11 CT/MRI scans CT/MRI scans will be performed in order to demonstrate the suitability of each cochlea for insertion of the electrode array and to look at the condition and viability of the hearing nerve. Scans may be performed with or without a general anaesthetic or other sedation depending on the age and general health of the child undergoing assessment. The ENT surgeon will be responsible for checking the CT/MRI scans and will discuss the results with the radiologist where necessary.

25 The results of the CT and MRI scans will be notified to the

QS

child's family within 5 working days of receipt by the cochlear

implant team.

32

Quality standards and good practice guidelines: Cochlear implants for children and young people

9.12 Ophthalmic assessment Optimum vision is crucial to the deaf child, yet more than 40% of all deaf children will have ophthalmic problems (Guy et al, 2003). Therefore, the cochlear implant team, must ensure that the child has had their vision assessed by an ophthalmologist, or arrange for them to be referred to the ophthalmology department. Deaf children and young people should be rereferred throughout their development for eye assessments, as outlined in ‘Vision care for deaf children and young people’ (NDCS & Sense, 2004).

26 ‘Following the identification of a permanent hearing loss the

QS

child should be referred for a full ophthalmic assessment, and where appropriate at key stages of their development’ (NDCS & Sense, 2004).

9.13 BCIG and other safety guidelines As part of the assessment process, the cochlear implant team will provide the family and other carers (such as those supporting the child in nursery or school) with updated (BCIG, 2004) safety guidelines and safety information provided by the cochlear implant device manufacturer.

9.14 Pneumococcal meningitis vaccination A small percentage of deaf children, young people and adults may have congenital abnormalities of the inner ear, which predispose them to meningitis. Other predisposing factors may include such things as acute middle ear infection (acute otitis media), immune-deficient status, and a prior history of meningitis. It is possible that the cochlear implant electrode array can act as a conduit for the spread of infection from the middle ear to the cochlea and thus cause meningitis. Because the surgically implanted equipment is a ‘foreign body’ this may act as a nidus for infection when a patient has a bacterial illness. Prior to surgery, it is the responsibility of the lead clinician on the cochlear implant team to determine the pneumococcal vaccination status of the child or young person, and ensure that the appropriate pneumococcal vaccine, in line with current Department of Health policy (Medical Devices Alert, 2004/046) is (or has been) provided. Other vaccinations should be carried out in line with Department of Health policy.

27 The lead clinician must ensure the child has received the

QS

appropriate vaccination cover against meningitis, and they are also protected by the appropriate vaccination programme.

Quality standards and good practice guidelines: Cochlear implants for children and young people

33

All occurrences of meningitis in cochlear implant patients should be reported to the Medicines and Healthcare Products Agency providing details of the implant manufacturer and model. As part of the assessment and ongoing care of the child, parents must be provided with written information of the signs and symptoms of meningitis, and provided with clear instructions to follow if they feel their child is at risk.

9.15 Otitis media Prior to implantation, the clinician should check the child or young person for otitis media and provide appropriate medical treatment (such as antibiotic treatment) if required. Consideration should also be given to prophylactic antibiotic treatment prior to implantation. Post implantation, children or young people who develop symptoms or signs of acute otitis media should be treated with appropriate antibiotics as a matter of urgency to prevent the spread of infection to the cochlea.

28 The consultant ENT surgeon on the implant team must be

QS

informed if a child develops signs of acute otitis media in the

implanted ear.

34

Quality standards and good practice guidelines: Cochlear implants for children and young people

10. The outcome of the assessment Following the assessments, the implant team will meet to decide whether a cochlear implant is the most appropriate intervention for the child. The parents and child will be invited to attend a meeting with the implant team where the team decision will be explained. The family must be provided with the opportunity for detailed discussion with the team. Children have a right to be involved in decisions about their care, and they must be given sufficient time to fully understand the short and long-term implications of having a cochlear implant. Communication should be at a level and method appropriate to their stage of development and degree of understanding. These outcomes of assessments will be recorded in ‘The Children’s Implant Profile’ (ChIP) (Hellman et al, 1989), or similar.

29 The child (wherever possible), parents and the cochlear

QS

implant team should discuss and agree the decision whether to implant or not. Following this meeting, the family should be notified in writing within 10 working days of the outcome of the assessment, including any concerns, which may affect suitability of a cochlear implant. A written report and other relevant information will be sent within 10 working days to the child’s referrer, their GP and local health and education services and all other service providers known to the cochlear implant team, advising them of the outcome of the assessment and of the family's decision. Where it is demonstrated that the child is not likely to benefit from a cochlear implant, a report will be sent within 3 weeks to the local audiology and education services, the referrer, and to the child's family regarding the outcome of the assessment. The report should include: • reason why a cochlear implant is considered to be unsuitable for the child • recommendations for change of hearing aid provision if appropriate • recommendations for future management, if considered necessary. Parents must be given the opportunity to have face-to-face discussions with the team on the background to the decision not to offer a cochlear implant to their child.

10.1 Consent and confidentiality ‘Children, young people and parents need valid, relevant, accurate, up-todate, easily accessible and well-presented information, that is appropriate to their level of understanding, before they can decide whether to consent to, or refuse, treatment’ (Department of Health, 2003).

Quality standards and good practice guidelines: Cochlear implants for children and young people

35

The cochlear implant team should be familiar with and follow the Department of Health guidance on consent (2004) (see also British Medical Association, 2000) and confidentiality (Department of Health, 2004). Services will need to obtain appropriate consent prior to any intervention. Children and parents need to be fully informed before they can decide whether to consent to, or refuse, treatment. Information they will need should cover: • what the treatment will involve • benefits and risks • immediate and long-term implications of not having treatment • what alternatives may be available • who will be administering the treatment.

30 Services will need to obtain consent from the child or parent

QS

prior to any intervention and before passing details of care

to others.

10.2 Establishing funding commitment for long-term NHS care 31 There must be an agreed commitment by the funding authority

QS

for the long-term support of the child.

The long-term funding commitment by the NHS must include the ongoing costs of staff involved in the child’s care. It must also cover the upgrading of the device, replacement in case of device failure, loss, irreparable damage, repairs of equipment, and provision of accessories. Some equipment (such as personal FM systems) may be a shared responsibility with the local services.

10.3 Preoperative care 32 Prior to cochlear implant surgery there will be a minimum of

QS

one visit to the child’s home and to their educational setting to assess the child’s progress, provide feedback and give advice about habilitation plans by the cochlear implant team's key worker(s).

36

Quality standards and good practice guidelines: Cochlear implants for children and young people

The preparatory stage will vary depending on the individual needs of the child and their age. However, preparing children for surgery should include the use of books, photographs, and toys to help them understand the admission process to hospital and to prepare them for the operative procedure. Play specialists can provide expertise for children who face operative procedures and complex assessments. To prepare the child and family for admission to hospital, a preoperative visit to the children’s surgical ward should always be offered to the child and the family so that they can meet the nursing staff.

Quality standards and good practice guidelines: Cochlear implants for children and young people

37

11. Surgery and postoperative care 11.1 The cochlear implant device: 33 The cochlear implant equipment should have a proven track

QS

record for safety and reliability in children, with CE approval, and conform to the recommendations of the Medicines and Healthcare Products Agency.

11.2 Nursing care prior to and at surgery 34 The liaison nurse or key worker (or other designated team

QS

member) should provide the child and family with information regarding hospital admission and care before and after surgery. On the day of admission to hospital they will visit the child and family to offer them support during their hospital stay.

The liaison nurse or key worker (or other designated team member) should be available for telephone contact prior to surgery, offering the child and family support and guidance. It is the responsibility of this person to refer the family to other team members if they are concerned or anxious about any aspect of their child’s surgical procedure or their care.

35 To facilitate communication with children who use sign

QS

language as their main means of communication, a minimum of one member of the nursing staff on the surgical ward should have skills in sign language to a minimum of CACDP stage 1.

11.3 Surgery and care Because cochlear implant surgery is a major procedure it is the responsibility of the ENT surgeon to ensure that all potential risks involved with having an anaesthetic, undergoing surgery and post surgical complications are clearly explained to the child and family. The implant surgery will be performed under general anaesthesia, and the operation site should be prepared when the child is anaesthetised. It is crucial that the facial nerve activity is monitored closely throughout the surgical procedure, as it can be at potential risk of damage.

38

Quality standards and good practice guidelines: Cochlear implants for children and young people

36 The facial nerve activity must be monitored throughout the

QS

surgical procedure.

The ENT surgeon and the audiological scientist will ensure that the electrode array is functioning correctly. This can be achieved by using one or more of the following tests whilst the child is still anaesthetised: • electrical auditory brainstem response • electrical stapedial reflex thresholds • neural response telemetry or equivalent test • integrity testing, where appropriate • impedance/voltage telemetry. Performing postoperative radiology can also assess the position of the electrode array. If this is not carried out at the same time as the surgery, then it should be completed before the child is discharged home, or before the processor is switched-on. The cochlear implant team will need to maintain contact with the child and family throughout the hospital stay and facilitate maximum care and support in conjunction with the nursing and medical staff. The surgeon will discuss the outcome of the operation with the child and parents’ as soon as it is feasible following surgery. Prophylactic antibiotics may be given. Children must be monitored carefully for postoperative wound infection. The number of days that the child is likely to stay in hospital will vary, however, at the time of print, the routine postoperative hospital stay is between 1 and 3 days.

11.4 Following surgery Before discharge from hospital, the child and family will need to be given clear guidance about care of the wound site and scalp. They will need to be provided with clear written guidance on action to take if the child has a head injury or specific medical problems that will need to be identified to them by the cochlear implant team.

37 Following discharge from hospital a summary of the surgery

QS

and outcome will be sent to the child’s GP and to the referrer

within 3 days.

Quality standards and good practice guidelines: Cochlear implants for children and young people

39

11.5 Discomfort, unexplained changes or swelling of the surgical site Any child who experiences any discomfort and unexplained changes, or any swelling of the surgical site must have direct access to the appropriate ENT professionals. The contact details must be clearly identified and provided to the family (and young person). The emergency appointment may include medical, audiological and electrophysiological staff as appropriate.

38 The child and family must have emergency access to an ENT

QS

specialist who has an understanding of the cochlear implant process and the potential complications.

11.6 Contact details for support The child and family should be provided with appropriate and written contact details for the implant team so that they have quick and easy access during normal working hours. If they have any concerns, out of normal working hours, it is essential that they have access to the appropriate on-call medical professionals. Therefore telephone contact details must be provided in writing by the implant team. Such information will need to be updated and replaced as required.

39 The child and family must be given contact details of the

QS

on-call medical professionals at the hospital.

11.7 Revision surgery Any decision regarding the surgical removal or replacement of the cochlear implant device, should it be necessary, will be made in close collaboration with the child, the child's parents, the surgeon, and members of the cochlear implant team.

11.8 Device failure If there is a suspected internal device failure the cochlear implant manufacturer should be informed so that they can carry out further integrity testing of the device function. The cochlear implant team will need to be kept informed of these results (Medicines and Healthcare products Regulatory Agency, 2005)

40

Quality standards and good practice guidelines: Cochlear implants for children and young people

On rare occasions, additional surgery may be required, for example because of a fault in the internal components of the cochlear implant system. Should this occur, the reason for the replacement will need to be clearly explained to the child, their family, their GP before the revision surgery takes place.

Quality standards and good practice guidelines: Cochlear implants for children and young people

41

12. Programming, follow-up care and support 12.1 Prior to programming Prior to the initial programming session the child and family should be provided with an up-to-date copy of the safety guidelines, produced by the BCIG Safety Working Group.

40 Before the processor is switched-on, a key member of the

QS

team will meet with the family to provide information and to further familiarise them with the external equipment in preparation for the fitting and tuning session.

12.2 Fitting the implant device and programming Medical checks will need to be carried out before the initial programming session by the cochlear implant team surgeon or audiological physician.

41 Following surgery the speech processor will be fitted and

QS

initially programmed between 4 and 5 weeks post surgery.

Speech processor programming involves establishing which electrodes produce useful hearing sensations and, for each electrode, measuring levels of electrical stimulation. Initial programming may need to be adjusted in the early stages of activation. The choice of an appropriate mode of stimulation, speech processing strategy, and the correct setting of parameters for electrical stimulation, are essential to this process. In very young children, electrophysiological measurements obtained intraoperatively may be used to guide initial stimulation levels. The audiological scientist will check the function of the cochlear implant via integrity testing.

12.3 Records of measurements 42 Records of measurements of all programmes installed in the

QS

software, and of all tests performed, must be kept on file.

Audiological records and measurements should be available on request and provided, with consent, to other parties who may have a legitimate reason for using them, eg education, health services, etc.

42

Quality standards and good practice guidelines: Cochlear implants for children and young people

12.4 Specialist contact sessions with the child, family and local professionals 43 The level of specialist contact sessions must be based on the

QS

individual needs of the child and their family. This will also depend on the needs of local service professionals.

The audiological scientist should regularly monitor and adjust the programming of the speech processor. In the initial stages this will require regular visits to the implant centre by the child and family. These visits should be scheduled to coincide with the auditory habilitation sessions wherever possible. Over time, visits are likely to reduce but this will vary in accordance with each individual child’s needs.

44 The recommended framework for a young congenitally deaf

QS

child should be:

Year

1

2

3

4/onwards

Habilitation support:

10

6

6

1

Speech processor programming:

5

1

1

1

Specialist surgeon

The child should be seen at least once each year

It can be expected that additional support and input will be required for a child with additional special needs. However, less support may be required for the older child and young person. If the audiological scientist needs to carry out programming of the device away from the implant centre, this should be carried out in a suitably quiet and comfortable child and family-friendly environment.

45 If there are concerns regarding the function of the internal

QS

cochlear implant the audiological scientist must arrange for integrity testing to take place as a priority and without delay.

The implant team will provide face-to-face contact with the child and family. They will work together to provide appropriate developmental listening, language and communication targets specific to the child (see ‘partnership and parental responsibility’, section 5.4, pages 14-15). During the follow up care when the child is being monitored and reviewed it is crucial that the implant team liaise closely with local services to share information regarding the child’s progress and current habilitation targets. They will also need to work with local service professionals to plan and implement relevant training packages.

Quality standards and good practice guidelines: Cochlear implants for children and young people

43

13. Ongoing evaluation of benefit 46 The following areas will need to be monitored using

QS

appropriate assessments. In the first year these will be carried out at a minimum of 6 month and 12 month stages. Subsequently, they will be completed at least annually. •

Use of the cochlear implant in various settings

•

Soundfield warble tone thresholds

•

Awareness, discrimination and recognition of environmental sounds

•

Awareness, discrimination and recognition of speech

•

Development of functional listening skills

•

Development of functional communication skills

•

Development of expressive and receptive language

•

Shift in modality of communication

•

Quality of life/well being of child and family

•

Emotional and social development.

Information on the results of these assessments will be sent to the child's family and local services within 3 weeks of completion.

13.1 Habilitation for the young person In addition to setting listening and language targets that are of an appropriate level of interest to the young person, specific packages of habilitation support should be offered. These packages can be carried out with individual cochlear implant users, or it may be more appropriate to offer them in a group setting with other young people with hearing impairment, for example: • communication skills • telephone training • speech intelligibility • social skills. It may be more appropriate, and therefore more effective for the young person, for packages to be offered during school holidays. Young people should be given information about self-help support groups, and other information to help them make contact and communicate with others of a similar age, for example www.ci4-teenz.com, www.earfoundation.org.uk and www.cicsgroup.org.uk websites.

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Quality standards and good practice guidelines: Cochlear implants for children and young people

13.2 Cochlear implant equipment The child's parents and local audiology and education service professionals will need to be provided with the following information: • how to use the cochlear implant equipment • how to care for and maintain the speech processor and all related accessories • operating instructions for the speech processor • what they should do if there is a need for a replacement speech processor leads, microphone, battery packs, and batteries, etc • up to date safety instructions. The implant team should ensure that they have a sufficient supply of spare speech processors, microphones, other equipment, and batteries readily available. Equipment, leads and batteries must be provided free of charge and despatched by the implant team on the day they receive the request for replacement.

47 The cochlear implant team will issue (or despatch)

QS

replacements for faulty external equipment, within 1 working day of notification being received that a fault has occurred.

Each child will be provided with a minimum of one set of spare leads and batteries, recommended for use with the child’s implant device, and ensure that further supplies are readily available.

13.3 Contralateral hearing aid provision Where it is appropriate for a child to continue to wear a hearing aid in the contralateral ear, the hearing aid should be supplied and maintained by the cochlear implant team, or by a hearing aid centre in the same trust as the cochlear implant programme, or, if considered more convenient, by a more local hearing aid centre if that centre agrees. Where agreement cannot be reached, to allow bimodal fitting to go forward, it is the ultimate responsibility of the cochlear implant programme to supply and maintain hearing aids for the contralateral ear. However, it is crucial that children and parents are included in discussions about provision of care, including whom they would prefer to provide, maintain and support the provision of a contralateral hearing aid.

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45

48 It is the responsibility of the cochlear implant programme to

QS

ensure appropriate provision and maintenance of the contralateral hearing aid for children with a cochlear implant (BCIG, policy on contralateral hearing aid provision, 2004). The contralateral hearing aid provider has responsibility for supplying replacement batteries free of charge to the user.

13.4 Personal FM equipment The decision to fit an implant user with a personal FM system should be based on the opinions of, and liaison between, local service professionals and the cochlear implant team. Children and parents must be involved in this decision making process. An appropriate time for fitting will be when the child has a stable map, is a reliable user of their implant and wherever possible can report on sound quality. The implant team will make recommendations with regard to the FM system transmission frequency, the most appropriate wearing position and how to minimise the risk of interference between the implant processor and the personal FM system. The child should be encouraged to trial the FM system at home and in the classroom. If it is proven to be beneficial and long-term use is indicated, the personal FM system should be provided and maintained by the child’s local education service. Records of objective and subjective measurements of the combined devices must be obtained at the time of issue of the personal FM system, and at any subsequent change of equipment or operating parameters. At the time of writing there is no nationally agreed FM fitting protocol, although this is at the development stage. When it becomes available consideration should be given to its adoption. Audiological information must be made available to other parties (ie local health and education services), with consent.

49 Children with a cochlear implant should have the opportunity

QS

to trial and assess a personal FM system. The equipment will need to be fitted by a fully trained member of the cochlear implant team in liaison with the local education service.

The implant processor/FM combination must be performance-checked against the audiological-recorded measurements at intervals of no longer than 1 year, and additionally when any equipment is replaced or repaired.

A personal FM system is potentially the most effective way of improving the signal to noise ratio for cochlear implant users in the classroom and in other difficult listening situations. However, well-fitted classroom soundfield

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Quality standards and good practice guidelines: Cochlear implants for children and young people

systems can also be beneficial and can be used in conjunction with a personal FM system.

13.4.1 Routine maintenance and monitoring Parents and teachers (or other responsible adult) must be trained and take responsibility for simple maintenance checks of the cochlear implant equipment and FM combination. This should include both visual checks of the equipment including any leads and adaptors and subjective listening checks (where possible). The nominated persons should be issued with accessories to enable them to carry out these tasks.

13.4.2 Assistive devices, leads and accessories The team will need to liaise closely with the child and family, and the local education service, so that all those involved can provide the support needed regarding equipment used in conjunction with the child's cochlear implant equipment, for example for use with: • audio equipment (eg personal stereo, television, etc) • telephone • personal FM system (see ‘personal FM equipment’,13.4, page 46) • soundfield system.

13.5 Battery safety The implant team has responsibility to ensure that the child and family understand that all batteries should be stored safely and that used batteries should be disposed of in a safe manner. The family will need to be provided with clear guidelines as to what action they should take if the child, or others, swallow a battery (NDCS, 2003).

13.6 Insurance and replacement guidelines Cochlear implant equipment and hearing aids are given to the child on loan and remain the property of the NHS. Should loss or damage occur, hearing aids, including cochlear implant equipment, should be replaced immediately to ensure continuity of care for the child (NCPA, 2003; NDCS, 2003). Department of Health guidelines provide audiology departments with the opportunity to charge users or parents for the cost of replacement of a hearing aid that has either been lost or maliciously damaged by the child or their parent. If the audiology department wishes to make a charge against them, then the user or parent has a right to insist on a panel of at least three people who will meet to discuss issues surrounding the alleged lost or maliciously damaged hearing aid. This panel will provide the trust with their

Quality standards and good practice guidelines: Cochlear implants for children and young people

47

findings and a decision will then be taken as to whether a charge can be made and what that charge will be.

50 If a dispute arises relating to loss or damage it is essential that

QS

the child is provided with replacement equipment of the same make and model, and without any delay, whilst the dispute takes place.

Children and parents have a right to be kept fully informed of any action and to contest the legality of the decision of the trust. The Department of Health guidelines also state that they would deplore any occasion where a health authority insisted that parents insure their child's hearing aids. Providing information or advice on insurance policies or schemes could be construed as ‘encouragement’ to insure.

13.7 New developments Over the next few years it can be expected that advances in cochlear implantation will increase the benefit to severely to profoundly deaf children. In addition, further developments in implant design should lead to smaller devices that are better suited to children, especially very young children. However, totally implantable devices are likely to be some years away. Bilateral implantation is currently being investigated in children. In the UK bilaterally fitting children is primarily carried out where there is a risk of ossification following meningitis. For other children, any additional benefit from bilateral implantation should be considered alongside the loss of their residual hearing (which may restrict choices in later life) and the need for surgical procedures.

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Quality standards and good practice guidelines: Cochlear implants for children and young people

14. Transfer of care (see NDCS 2000: Guidelines on transition from paediatric to adult healthcare) 51 The cochlear implant team should have clear written policies

QS

detailing the transfer of care pathway to another service.

These policies should cover arrangements for: • transfer between services • the transfer of notes (electronic or paper) • access and direct self-referral systems. The implant team should provide detailed written information to the child, parent and young person informing them what action they should take if problems occur during transfer between services.

14.1 Transfer to an alternative paediatric or adolescent service When a child or young person needs to transfer to an alternative service, it is the responsibility of the existing provider to ensure that smooth transfer takes place, and that they fully understand the process involved. They should be informed in writing of details relating to the new service and they and the accepting cochlear implant programme must be provided with the information listed in item 14.2 below, ‘transfer to adult care’.

52 The existing service provider will need to arrange an

QS

appointment with the new service prior to transfer and the child, family and/or young person notified in writing.

14.2 Transfer to adult care Young people with long-term conditions need preparation for the move from the child or adolescent service to the adult service.

53 All young people with ongoing health needs should have a

QS

plan developed with them for the transfer of their care to adult services (Department of Health, 2003).

Where there is a separate adult and paediatric service, arrangements should be in place for the smooth transfer of ongoing care, with a system in operation for the transfer of notes. A clear transfer policy should include a strategy for the maintenance of the cochlear implant equipment, identified

Quality standards and good practice guidelines: Cochlear implants for children and young people

49

age of transfer (and how this might change depending on circumstances) and services for young adults in further and higher education. Details given to the adult programme will need to include the following, and copies of this information must also be provided to the young person/family: • date of first appointment required at the adult programme • dates of surgical procedures • surgical and post-fitting complications • audiological test results • attendance record • list of local services working with the young person/family • ongoing recommendations. It is the responsibility of the paediatric/adolescent team to ensure that the young person understands the implications, policies and procedures involved when transferring from their existing service to an adult service. The paediatric/adolescent service must make an appointment with the adult cochlear implant programme before the young person is discharged, and notify the young person in writing that this appointment is to take place. The local audiology service and GP should also be notified in writing of this transfer and of the new appointment date with the adult programme.

54 The paediatric/adolescent programme should request an

QS

appointment for the young person to attend the adult cochlear implant programme to take place no later than 6 months after discharge. The adult programme should acknowledge receipt of the transfer information in writing to the paediatric/adolescent programme, the young person and family and the young person’s GP, within 2 weeks of receipt.

In addition, the young person and parent should be provided with the following before completion of the transfer to the adult service: • written advice and information about their transfer • details of the clinic and contact details, address and telephone numbers etc • details and contact numbers of social service facilities • details and contact numbers of voluntary agencies and support groups • information on the regularity of appointments and the importance of attending the clinic.

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Quality standards and good practice guidelines: Cochlear implants for children and young people

During the first months following transfer it is important that the young person is encouraged to contact the paediatric/adolescent team to discuss any issues of concern regarding their transfer of care. Teams with an all-age-service should have protocols, which recognise that the young person should be encouraged to be independent and take responsibility for their own care. For example, assessments, surgical procedures, habilitative care should be directly with the young person, with copies of all letters and reports being sent directly to them.

Quality standards and good practice guidelines: Cochlear implants for children and young people

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15. Service planning, evaluation and audit ‘Children, young people and their parents should participate in designing NHS and social care services that are readily accessible, respectful, empowering, follow best practice in obtaining consent and provide effective response to their needs’ (Department of Health, 2003). Children, young people and families should be routinely involved in the planning and improvement of services. Guidance on seeking the views of children and young people can be found in the Children’s and Young People’s Unit (2001) document. Multi-disciplinary child-specific clinical audits should be undertaken in all specialities in which children are treated (Department of Health, 2003). The cochlear implant service should carry out an annual audit to evaluate the effectiveness and family-friendliness of the service, as well as identifying and implementing changes to improve service provision. As part of this audit, the views and experiences of users, ie children, young people and families, must be gathered.

55 Each cochlear implant centre should produce an annual report

QS

for internal and external use that should detail:

•

clinical activity

•

surgical complications

•

number of device failures and the possible cause of such failures

•

measures of children's progress, to include informal assessment of social and emotional development

•

soundfield warble tone thresholds and speech discrimination measurements

•

research findings.

15.1 Complaints procedure It is the responsibility of the cochlear implant service to ensure that the child and family understand the standard hospital complaints procedure, should they wish to make a complaint. There should be written policies and protocols to follow in the case of a complaint, and these should follow national guidelines.

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Quality standards and good practice guidelines: Cochlear implants for children and young people

16. Acknowledgements The National Deaf Children’s Society and the British Cochlear Implant Group would like to thank all those involved with the development of this revised document. The document was sent for consultation to: • Cochlear implant programmes throughout the UK • BCIG Council • NDCS trustees and staff • The Cochlear Implant Children’s Support Group • Parents and young people • The membership of the NDCS Children’s Hearing Services Working Group • The National Committee of Professionals in Audiology • The BSA Paediatric Audiology Interest Group • Key organisations within health, education and social care • Leading professionals working with and influencing services for deaf children and young people • Cochlear implant manufacturers in the UK. As part of the consultation process the draft document was placed on the NDCS website calling for comments from professionals, parents and young people.

All comments received have been considered as part of the editorial process. The editorial group was: • Barbara Homer, Deputy Director UK Services, NDCS (Co-ordinator) • John Ford, Head of Department, Advisory Teachers of the Deaf, RNTNE Hospital, London • Vicki Kirwin, Audiology Specialist, NDCS.

Further information or comments relating to this quality standards document should be sent to Barbara Homer, NDCS, 15 Dufferin Street, London EC1Y 8UR, or email [email protected]

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17. Appendix 1 Alphabetical listing of key professionals working with the child, family and cochlear implant team. In addition to the expertise of the core team and those working within health and education at a local level, there may be a need to request specialist input and support from others to contribute to the assessment and habilitation of the child. This additional support will depend on the individual needs of the child and their family. Wherever possible such specialist staff should have experience of working with deaf children and their families: • class teacher/teaching assistant • clinical psychologist • communication support worker • community paediatrician • educational audiologist • educational psychologist • general practitioner • genetic counsellor • geneticist • health visitor • liaison nurse • occupational therapist • ophthalmologist, consultant • paediatric anaesthetist • paediatrician, consultant • physicist, consultant • physiotherapist • radiologist, consultant • sign/spoken language interpreter • social worker/social worker for deaf people • special educational needs coordinator (or advisor in Scotland).

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Quality standards and good practice guidelines: Cochlear implants for children and young people

18. References Association of Directors of Social Services (ADSS), British Deaf Association (BDA), Local Government Association (LGA), National Children’s Bureau (NCB), The National Deaf Children’s Society (NDCS) & Royal National Institute for Deaf People (RNID) (2002) Deaf Children: Positive practice standards in social services. (NDCS/RNID). Baguley D, Davis A & Bamford J (2000) Principles of family-friendly hearing services for children. BSA News, 29 35-39. British Association of Audiological Physicians (ongoing review) Policy documents relating to the investigations for children with a bilateral sensorineural hearing loss. Available from: www.baap.org.uk/Guidelines/guidelines.html British Association of Community Doctors in Audiology (ongoing review) Policy documents relating to the investigations for children with a bilateral sensorineural hearing loss. Available from: www.bacda.org.uk/ British Cochlear Implant Group. (1999) NHS Supplies National Tender Specification British Cochlear Implant Group (2004) Recommended guidelines on safety for cochlear implant users. Available from www.bcig.org/ British Cochlear Implant Group (2004) Policy on contralateral hearing aid provision. Available from: www.bcig.org/ British Medical Association (2000) Consent, rights and choices in health care for children and young people, December. British Society of Audiology (BSA) (2003) Recommended procedures for puretone audiometry. Available on: www.thebsa.org.uk BS EN ISO 8253-1 (1998) Acoustics. Audiometric test methods – Part 1: Basic pure tone air and bone conduction threshold audiometry. Available on: http://www.npl.co.uk/acoustics/techguides/audiometry/standards/ BS EN ISO 8253-2 (1998) Acoustics. Audiometric test methods – Part 2: Soundfield audiometry with pure tone and narrow-band test signals. Available on: http://www.npl.co.uk/acoustics/techguides/audiometry/standards/ Children and Young People’s Unit (November, 2002) Learning to Listen: Core principles for the involvement of children and young people, DfES Publications. Department of Health (2002) Listening, hearing and responding; Department of Health Action Plan: Core principles for the involvement of children and young people. The Stationary Office. Department of Health (2003) Getting the right start: National Service Framework for Children, Standard for hospital services. Available on: www.doh.gov.uk/nsf/children/gettingtherightstart.htm.

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Department of Health (2004) Seeking consent: working with children. Available on: www.doh.gov.uk/consent Department of Health (2004) Information Authority. Confidentiality – codes of practice for NHS staff. Available at: www.dh.gov.uk/PolicyAndGuidance/InformationPolicy/PatientConfidentiality Dettman S J, Barker E J, Rance G, Dowell R C, Galvin K L, Sarant J Z, Cowan R S C, Skok M C, Hollow R, Larratt M & Clark G M (1996) Components of a rehabilitation programme for young children using the Multichannel cochlear implant. In: Allum D J (ed) Cochlear implant rehabilitation in children and adults. Whurr Publishers, London. Fortnum H, Summerfield A Q, Marshall D, Davis A, Bamford J (2001) Prevalence of permanent childhood hearing impairment in the United Kingdom and the implications for universal neonatal hearing screening: questionnaire based ascertainment study. British Medical Journal, 323. Guy R, Nicholson J, Pannu S S & Holden R (2003) A clinical evaluation of ophthalmic assessment in children with sensorineural deafness. Child: Care, Health and Development 29:377-384. Hall D (2004) Children’s audiology services – a multi-professional review in partnership with NHSU. Report of a seminar held on March 23rd 2004 at RCPCH. Hall D M B & Elliman D (2002) Health for All Children. (4th edition) Oxford University Press. Hellman S A et al. (1991) The Development of a Children’s Implant Profile Implant Centre Speech and Language Therapists (1998) Guidelines for Good Practice: working with clients with cochlear implants. Implant Centre Teacher of the Deaf (ICTOD) (2003) Working with children with cochlear implants (available from BCIG). Kuhl P, Williams K, Lacerda F, Stevens K & Linblom B (1992) Linguistic experience alters phonetic perception in infants by 6 months of age. Science, Vol 255, No 5044, 606-608. Markides A (1986) Age at fitting hearing aids and speech intelligibility. British Journal of Audiology, 20, 165-167. McConkey Robbins A, Burton Koch D, Osberger MJ, Zimmerman-Phillips S & Kishon-Rabin L (2004) Effect of age at cochlear implantation on auditory skill development in infants and toddlers. Archive of Otolaryngology Head and Neck Surgery, Vol 130, May, 570-574. McCormick B & Archbold S (eds) (2003) Cochlear implants for young children (2nd edition) Whurr Publishers, London. Meadow-Orlans K (1987) An analysis of the effectiveness of early intervention programmes for hearing-impaired children. In: Guralnick M & Bennet F (eds) ‘The effectiveness of early intervention for at-risk and handicapped children’. Academic Press, 325-358.

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Medicines and Healthcare products Regulatory Agency (2005) Reporting adverse incidents and disseminating medical device alerts. Available at: http://devices.mhra.gov.uk/mda/mdawebsitev2.nsf/981591cd2aa346660025 6a7600410666/eefc0c0e8d90135c80256f720055834f/$FILE/MDA-2005001.pdf National Committee of Professionals in Audiology (2003) Procedures for charging for lost or damaged hearing aids in NHS audiology departmentsA questionnaire survey and development of a new protocol, BSA News. The National Deaf Children’s Society (2000) Quality Standards in Paediatric Audiology Volume IV; Guidelines for the Early Identification and the Audiological Management of Children with Hearing Loss. The National Deaf Children’s Society (2002) Quality Standards in the Early Years: Guidelines on working with deaf children under two years old and their families. The National Deaf Children’s Society (2003) Insurance and replacement of hearing aids and cochlear implant equipment – NDCS policy statement. The National Deaf Children’s Society (NDCS) (2003) Hearing Aids: A Guide pp 23. The National Deaf Children’s Society (NDCS) and Sense (2004) Quality standards in vision care for deaf children and young people. NDCS & Sense. The National Deaf Children’s Society (2005) Guidelines on transition from paediatric to adult health care. NHS Estates (1994) Health Building Note 12(3), ENT and audiology clinics hearing aid centre, refer to www.nhsestates.gov.uk. NHS Estates (2003) Improving the patient experience – friendly healthcare environments for children and young people. The Stationery Office. NHS Estates (2004). Hospital accommodation for children and young people: Health Building note 23. Papsin B C, Sirimanna T K S, Albert D M and Bailey C M (1997) Surgical experience with bone anchored hearing aids in children. Laryngoscope, 107, 801-806. Ramkalawan T & Davis A (1992) The effects of hearing loss and age of intervention on some language metrics in young hearing-impaired children. British Journal of Audiology, 26, 97-107. Royal College of Speech and Language Therapy (RCSLT) (1997) Communicating Quality (2nd edition), RCSLT. Royal College of Surgeons of England (2000, May) Children’s surgery – a first class service, Report of the Paediatric Forum of the Royal College of Surgeons of England. Sharma A, Dorman M F & Spahr A J (2002) A sensitive period for the development of the central auditory system in children with cochlear implants: Implications for age of implantation. Ear & Hearing, 23(6) 532-539.

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Summerfield A Q & Marshall D H (1995) Cochlear Implantation in the UK, 1990-1994 Report by the MRC Institute of Hearing Research in the Evaluation of the National Cochlear Implant Programme. The main report. United Nations (1989) Convention for the rights of the child, Article 12. (Ratified by the UK government in 1991). Yoshinaga-Itano C (1998) Factors predictive of successful outcomes of deaf and hard-of-hearing children of hearing parents. Available on: www.colorado.eds/slhs/mdnc/efficacy.html.

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The National Deaf Children’s Society Registered office: 15 Dufferin Street, London EC1Y 8UR NDCS Freephone helpline: 0808 800 8880 (voice and text) open Monday to Friday from 10am to 5pm Phone: 020 7490 8656 Fax: 020 7251 5020 Email: [email protected] Website: www.ndcs.org.uk Registered Charity No 1016532 April 2005