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JSNA Chapter: Dual Sensory Loss

Section: Specific Condition
Next Review Date: 30/01/2015
Date Published: 01/02/2012

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Contents

  1. Introduction
  2. Who's at risk and why?
  3. The level of need in the population
  4. Current services in relation to need.
  5. Projected service use and outcomes in 3-5 years and 5-10 years.
  6. Evidence based (what works and what does not work)
  7. Unmet needs and service gaps
  8. Equality Impact Assessment
  9. Recommendations for Commissioning
  10. Recommendations for needs assessment work
  11. Key contacts
  12. Chapter References
  13. Signed off by


Introduction

Surrey County Council and NHS Surrey have completed a joint commissioning strategy for people with sensory impairment (1). This was undertaken over 12 months to August 2011 on a full co-design basis with a wide range of stakeholders.

To reflect differing needs and services the strategy and subsequent implementation plans focussed on four groups: 

  • People who are hard of hearing (including people who are deafened)
  • People with a visual impairment
  • People with a dual sensory loss
  • People who are Deaf and use British Sign Language

This chapter is about people with dual sensory loss.  The generally accepted working definition of deafblindness or dual sensory loss (DSL) is:

People are deafblind if their combined sight and hearing impairment causes difficulties with communication, access to information and mobility. This includes people with a progressive sight and hearing loss (2).

The terms ‘combined sight and hearing loss’, ‘dual sensory loss’ and 'deafblindness' are used interchangeably in this chapter.

There are 4 generally accepted groups of people with dual sensory loss: 

  • People with a congenital hearing and sight impairment. 
  • People blind from birth or early childhood who subsequently acquire a hearing loss that has a significant functional impact. 
  • People deaf from birth or early childhood who subsequently acquire a significant visual loss. 
  • People who have acquired a hearing and sight impairment in later life which has a significant functional impact (the largest group).

The impact of a dual sensory loss is significantly different from a single loss as the person’s ability to compensate is reduced. Different coping strategies and skills are required, and different support services are needed.

Dual sensory loss services provided by local authorities are comparatively unusual in that they are specified within statutory guidance issued by the Department of Health in 2001 and reissued in June 2009: ‘Social Care for Deafblind Children and Adults’ LAC (2001) 8 under Section 7 of the local Authority Social Services Act 1970. (2)

Local authorities with adult social care responsibilities have a responsibility to demonstrate that they are following guidance from the Secretary of State for Health, and if they fail to do so may be subject to judicial review.

The guidance requires local authorities to: 

  • Identify, make contact with and keep a record of people with dual sensory loss in their catchment area.
  • Assessments to be carried out by a specifically trained person or team, in particular to assess the need for one-to-one human contact, assistive technology and rehabilitation 
  • Ensure services provided to people with dual sensory loss are appropriate, recognising that they may not necessarily be able to benefit from mainstream services or those services aimed primarily at blind people or deaf people who are able to rely on their other senses. 
  • Ensure that people with dual sensory loss are able to access specifically trained one-to-one support workers if they are assessed as requiring one. 
  • Provide information about services in formats and methods that are accessible to people with dual sensory loss. 
  • Ensure that one member of senior management includes, within his/her responsibilities, overall responsibility for services for people with dual sensory loss.

 

A number of key actions follow from the guidance: 

  • Authorities must actively seek to identify and offer support to people with dual sensory loss. Responding to referrals is not enough. 
  • Dual sensory loss, particularly in older people, is often associated with additional needs – physical disabilities, learning disability, and health conditions – requiring the involvement of specialist trained assessors. 
  • Members of the black and ethnic minority (BME) community with dual sensory loss may well require a considered approach to identify and provide appropriately sensitive support. 
  • A challenge to the assumption that current services may be sufficient for deafblind people. They may well require fundamentally different services. 
  • The availability of support workers. 
  • An evaluation to confirm that assessors are suitably trained and experienced. 
  • A named senior manager must have overall responsibility.

 

Key issues and gaps

Surrey has completed a joint commissioning strategy for people with sensory impairment (1). This was developed within a full co-design model. The Surrey Association for Visual Impairment (SAVI) and Surrey Coalition of Disabled People facilitated meetings and contact with people who have dual sensory loss. 

People with dual sensory loss identified a range of priorities and services they would like to see developed. The 3 top priorities were: 

  • Increase awareness in the community and in health and social care workers of the impact of having dual sensory loss. 
  • Ensure dual sensory loss services meet the needs of people with complex needs e.g. people with dementia, people with a learning disability 
  • Offer services, aids and equipment that meet the needs of people who have dual sensory loss.

 
Although Surrey has performed comparatively well against the guidance by contracting specialist services, there are areas for further development which have been addressed through a recent (2011) contract tendering exercise as an outcome of the joint commissioning strategy:

  • Greater emphasis on identifying and supporting people with dual sensory loss, especially those from BME communities. 
  • Ensuring that specialist assessments are undertaken with the collaboration of the local social care team to increase the awareness of the DSL issues, to enable access to more mainstream services if required, and to ensure that personalised assessments and budgets are offered where people are eligible. 
  • Provision of a wider range of assistive technology.

The key remaining gap in services is the absence of a clear integrated pathway between NHS Surrey, Adult Social Care, contracted suppliers, other third sector organisations, and Boroughs and Districts.

Recommendations for Commissioning

Commissioning and procurement of Adult Social Care community based services for people with dual sensory loss was completed in autumn 2011, with a core contract for 2 years with 2 possible 1-year extensions.

Further areas for review and possible re-commissioning are: 

  • The development and maintenance of a revised register which better meets people’s needs - a review is scheduled for completion by April 2012. 
  • Availability of appropriate accommodation for people with DSL requiring long term care in care homes or in supported living. A review will begin autumn 2011 to complete spring 2012. 
  • Services for people with DSL who have additional needs (learning disability, dementia). A review to begin spring 2012 to complete autumn 2012.
  • Closer links with NHS Surrey in the development of joint pathways.

 


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Who's at risk and why?

Deaf Blind UK identifies the causes of dual sensory loss.(3)

Congenital deafblindness can be caused by a range of genetic disorders or medical conditions. The three most common are: Rubella, Charge, and Usher’s Syndrome.

Congential rubella syndrome can affect children whose mothers had rubella during pregnancy. Infection in the first 10 weeks of pregnancy is reported as affecting up to 90% of infants, typically with a degree of hearing loss, and cataracts in one or both eyes.

Charge (an acronym) is believed to be a genetic condition, which causes a wide range of physical disabilities, typically including significant sight and hearing problems.

Usher’s Syndrome is genetic. People with Usher’s are born deaf or hard of hearing. It usually impacts on vision in late childhood as the retina degenerates over time to tunnel vision. 3-6% of all deafblind adults have Usher’s Syndrome.

Acquired deafblindness can be caused by accident, illness or most commonly as a consequence of unremediated sight and hearing loss in later life. Over half of people over 60 have some form of hearing loss; and 1:12 some form of sight loss. The most common causes of sight loss in later life are cataracts, macular degeneration and glaucoma.

Cataracts can usually be treated successfully; glaucoma can be prevented or treated if caught early; there are new treatments for macular degeneration but these are in early stage development and not generally available. The most common cause of hearing loss in later life is presbyacusis which affects the cochlea and restricts the range of frequencies which can be heard: helped by hearing aids, and in some circumstances cochlear implants.

Regular eye health and hearing checks are recommended, particularly for older people. Information and advice is readily available from national charities such as SENSE, RNID and RNIB. In Surrey the Surrey Association for Visual Impairment (SAVI) offers a specialist service for deafblind children and adults. 
 


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The level of need in the population

National Picture

It is estimated that there are some 2.7m people in the UK with some level of dual sensory loss. Of these some 132,000 have severe impairment of both sight and hearing (of which three quarters are aged 70 and over); and a further 356,000 have significant dual impairments. (4)

Prevalence rates will increase:
Table 1: Estimated Prevalence Rates per 100,000 of Deafblindness among total population

 

2010

2030

Severe dual impairments

212

343

Significant dual impairments

572

806

Source: SENSE 2010

See also JSNA Data: Dual Sensory Loss

The most significant increase will be in the 70+ age groups from 212 people per 100,000 peopulation to 343 - a 61% increase. The rate of increase will be higher in people over 70 from minority ethnic communities. (Source: Centre for Disability Research 2010 estimates the number of people with co-occurring vision and hearing impairments in the UK).

 

Surrey Picture

The tables below show the predicted prevalence of adults (20-69) and older people (70+) by Borough and District with a significant dual sensory loss. The numbers correlate with demography: areas with higher proportion of people aged 70+ have higher numbers. Elmbridge, Waverley and Reigate/Banstead are all predicted to have approximately 1000 deafblind older people by 2030.

Table 2: Estimated Deafblind Adults Aged 20+ in 2010

 

 

Surrey 20-69 Population Predicted to Have Dual Sensory Loss

Surrey 70+ Population Predicted to Have Dual Sensory Loss

Surrey 2,051 4,517
Elmbridge 231 557
Epsom and Ewell 141 286
Guildford 242 473
Mole Valley 174 409
Reigate and Banstead 252 530
Runnymede 144 310
Spelthorne 175 395
Surrey Heath 149 270
Tandridge 168 363
Waverley 233 557
Woking 155 296

Source: SENSE 2010

See also JSNA Data: Dual Sensory Loss

Access to universal sources, particularly those provided by Adult Social Care and NHS Surrey will require equality impact assessments and review against current best practice guidance.

DeafBlind UK conduct regular surveys of the experience deafblind people have of health services (the ‘Deafblind Health Survey’). (4) In 2006 a national sample of 486 deafblind people found that: 

  • 91% thought they were shown a positive attitude by health staff. 
  • 58% received letters and appointment cards in a format they could not read. 
  • 59% thought healthcare staff were not aware of their needs. 
  • 77% used family members or friends to communicate in the absence of trained interpreters. 
  • Less than 16% were offered longer than average appointments. 
  • 73% thought access to services had not improved. 
  • 10% had put themselves at risk by not properly managing prescribed medication.

SENSE conduct similar Local Authority Adult Surveys.  Key findings from the 2007 survey (117 authorities) (5):

  • 20% of authorities responding each year since 2003 had not identified any deafblind adults.
  • Less than 50% of those identified were offered a specialist assessment.
  • Authorities were providing less 1:1 support and to fewer deafblind people.
  • Those authorities who had targeted deafblind people had found four times the predicted government’s minimum prevalence rate.

People from BME communities are less likely to access universal services. Those members who are deafblind may experience increased difficulty in accessing specialist services as a consequence of their disability, ethnicity and cultural identity. DeafBlind UK (6) recommends as best practice to engage the BME deafblind community:

  • Involve in service planning. 
  • Build in needs assessments of BME communities. 
  • Use workers with the relevant language and signing skills. 
  • Use staff who are culturally confident. 
  • Make services accessible by having interpreters available, using assistive technology, having trained advocates, working within a pathway across agencies.
  • Encourage personalised budgets and direct payments where appropriate.

Those Boroughs/Districts with high populations aged 70 and over and with higher than average BME populations should review services for deafblind people within their community plans.


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Current services in relation to need.

Compared with other authorities Surrey is considered to have a well developed service for deafblind people, previously managed under contract by Surrey Association for Visual Impairment (SAVI). SAVI seek monthly feedback on their DSL service and satisfaction levels are high.

Deafblind people were involved in developing the current sensory joint commissioning strategy for people with sensory impairment.

Adult Social Care provides services for people with dual sensory loss through a contract, and spot purchases for communicator guides from SAVI. NHS Surrey also provide a grant to SAVI for a deafblind support worker.

In January 2010, SAVI had 1243 people with dual sensory loss on their database of the 6568 people with dual sensory loss likely to be living in Surrey.

SAVI operate an open referral system. People receive an assessment from appropriately trained staff, a communication plan, advice and support in accessing services and the opportunity to receive 1:1 support from a trained communicator guide.

Table 3: Referrals to and services provided by the dual sensory loss team (SAVI) over the last 6 years

 

04/05

05/06

06/07

07/08

08/09

09/10

New referrals

76

80

92

97

77

95

Number of people supported

143

151

157

189

192

224

People using Communicator Guide service

35

42

57

60

78

87

Number of Communicator Guides

20

26

32

28

34

29*

Hours of communicator guide service provided**

 

4618

5920

6274

7541

9010

* As at 31st March 2010
** Hours delivered excluding private hours.
Source: SAVI 2010 
See also JSNA Data: Dual Sensory Loss


The work of the dual sensory loss team has continued to grow slowly but steadily over the last five years as the table above demonstrates. In 2008/09, there were fewer new referrals than the previous year but more ongoing specialist support. The average age of a person using the service is 85 years. Approximately the same number of communicator guides in 09/10 compared to 07/08 offered 2736 more hours to 27 more people.

It is understood that there is no comparable data available from NHS Surrey specifically on services for deafblind adults. Locality and long term teams in Adult Social Care as part of their generic service routinely provide support to deafblind adults with less complex need, but this would not be separately recorded.

There have been no previous JSNA evaluations.
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Projected service use and outcomes in 3-5 years and 5-10 years.

 

Table 4: Estimated Deafblind Adults Aged 20-69 2015 - 2030

 

2015

 

 2030

 

Surrey

2,143

2,410

Elmbridge

243

287

Epsom and Ewell

141

170

Guildford

250

268

Mole Valley

181

189

Reigate and Banstead

266

329

Runnymede

153

178

Spelthorne

181

204

Surrey Heath

158

176

Tandridge

170

188

Waverley

236

256

Woking

164

186

 

Source: SENSE 2010 

See also JSNA Data: Dual Sensory Loss

Table 5: Estimated Deafblind Adults Aged 70+ in 2015 - 2030

 

2015

 

2030

 

Surrey

5,156

8,360

Elmbridge

610

916

Epsom and Ewell

322

513

Guildford

512

876

Mole Valley

445

658

Reigate and Banstead

582

986

Runnymede

389

564

Spelthorne

435

647

Surrey Heath

354

564

Tandridge

429

673

Waverley

647

1,101

Woking

363

538

Source: SENSE 2010 

See also JSNA Data: Dual Sensory Loss

The tables above indicate that by 2015 there will be an additional 92 people (4.5%) aged 20-69 and an additional 639 people (14%) aged 70+.  By 2030 the increases will be 359 (17%) in the 20-69 age group and 3,843 (85%) in the 70+ age group.

Key messages are:

  • There will be a significant increase in numbers, primarily in the 70+ age group. 
  • The increase will be highest in the BME community aged 70+. 
  • Current communication skill levels across social care and NHS front line staff are likely to be low and will require an additional training focus. 
  • Public health messages with advice on preventing (by early detection and intervention) the avoidable causes of sight and hearing loss in older age groups would be beneficial. 
  • Methods of enabling deafblind people to participate in service planning need to be developed to ensure that people receive the services they want. 
  • The development of personal budgets for deafblind people (both social care and health) will ensure that deafblind people have choice and control over services; may be more cost effective given the comparatively small number involved from contracting services; and may stimulate small scale local providers to adapt current services avoiding the need for more specialist services to be developed. 
  • The use of suitably tailored social services may make a significant difference in enabling deafblind people to communicate with each other and care providers. 
  • The strategic direction is for more older people to be able to remain in their own home for as long as they wish. It will be important that support services are aware of the specialist needs of deafblind older people, particularly in relation to communication, risk management and self care.

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Evidence based (what works and what does not work)

There are two national support organisations for deafblind people: SENSE, and DeafBlind UK. They provide a wide range of advice on recommended service developments. Local authorities are required to work within section 7 guidance (see earlier), which is positively promoted by both organisations and is considered to result in better services.

Deafblind UK’s research on deafblind people’s experience of the NHS (4) led to ‘Cause and Cure: Guidance’ with recommendation for improvements in the NHS in 3 areas: 

  • Awareness: Training of front of house staff in disability awareness, sensory impairment and basic communication skills. 
  • Accessible information: All documents in font 18; appointments by email, fax, phone and typetalk. Transcription into Braille, audiotape and Moon. 
  • Interpreting services: A contract to ensure interpreters can use clear speech, deafblind manual and BSL (to include visual frame and hands on signing). Use of communicator guides in appropriate circumstances.

There is an expanding range of assistive technologies of direct benefit to deafblind people. These include: 

  • Alerting systems (smoke alarms, alarm clocks, cooker alerts) 
  • Books & newspapers (talking teletext, text to speech UP3s) 
  • Aids to daily living (liquid level indicators, talking tins) 
  • Listening aids (wireless multifunctional listener for TV, radio) 
  • Lighting (LED and daylight lamps) 
  • Magnifiers (handheld CCTV magnifier, video desktop magnifiers) 
  • Mobile phones (enlarged text messaging) 
  • Mobility aids (tactile maps, ultrasonic obstacle detector) 
  • Computer aids (screen magnification, screen readers, talking browsers) 
  • Tactile markers (match shapes with colours) 
  • Telephones (voice amplification, large buttons, couplers linked to hearing aids)

 


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Unmet needs and service gaps

As part of the commissioning strategy deafblind people identified the services they would like to see in place across Surrey, which were then collated under outcome headings. These are below. Some services are in place, others are less well developed and are indicated with an asterisk. The 3 highest priorities of deafblind people are:

  • Increase awareness in the community and in health and social care workers of the impact of having dual sensory loss
  • Ensure dual sensory loss services meet the needs of people with complex needs e.g. people with dementia, people with a learning disability
  • Offer services, aids and equipment that meet the needs of people who have dual sensory loss

Improving health and emotional well-being
“Services promote and facilitate the health and emotional well-being of people who use services”.
Priorities 

  • Ensure access to and provision of interventions such as regular sight and hearing checks. 
  • Ensure preparations for an ageing society recognise and provide for the prevalence and impact of dual sensory loss.

 

Improving quality of life
“Services promote independence and support people to live a fulfilled life making the most of their capacity and potential’.
Priorities 

  • Provide required health and social care assessments, including specialist assessments and carers’ assessments. 
  • Assessments to be carried out by a specifically trained person (or team) in dual sensory loss, in particular to assess need for one-to-one human contact, assistive technology and rehabilitation. 
  • Access to enablement/rehabilitation services to promote and retain independence. 
  • Offer services, aids and equipment that meet the needs of people who have dual sensory loss. 
  • Enable access to universal services and community activities, promoting social inclusion and preventing isolation caused by dual sensory loss.*

 

Making a positive contribution
“Councils ensure that people who use their services are encouraged to participate fully in their community and that their contribution is valued equally with other people”.
Priorities 
 

  • Ensure that people can access specifically trained 1:1 support workers if they are assessed as requiring one, to enable people to live as full and independent a life as possible. 
  • Ensure the on-going involvement of people, in appropriate ways, in co-designing services. 
  • Increase awareness in the community and in health and social care workers of the impact of having dual sensory loss.

 

Increasing choice and control
“People, and their carers, have access to choice and control of good quality services, which are responsive to individual needs and preferences”.
Priorities 
 

  • Provide information about services in formats and methods that are accessible to people. 
  • Review specialist accommodation options available for people with dual sensory loss.* 
  • Make sure personalisation of social care includes people with dual sensory loss, and their carers.

 

Freedom from discrimination and harassment
“Those who need social care have equal access to services without hindrance from discrimination; they feel safe and safeguarded from harm”.
Priorities 

  • Ensure services provided to people with dual sensory loss are appropriate, recognising that this unique group may not necessarily be able to benefit from mainstream services or those services aimed primarily at blind people or deaf people who are able to rely on their other senses. 
  • Identify, make contact with and keep a record of people with dual sensory loss. 
  • Ensure that one member of senior management within Adult Social Care has overall responsibility for services for people with dual sensory loss, with commitment from local social care teams. 
  • Enable people with dual sensory loss to have safe passage round their environment including mobility training, transport, signage and pavements 
  • Equity of access to dual sensory loss services across Surrey. 
  • Ensure dual sensory loss services meet the needs of people with complex needs e.g. people with dementia, people with a learning disability and people with mental health problems.*

Economic well-being
“People are not disadvantaged financially and have access to economic opportunity and appropriate resources to achieve this”.
Priorities 

  • Maximise people’s access to welfare benefits and entitlements. 
  • Support to access employment, education and training to be available for people who have dual sensory loss.

Maintaining personal dignity and respect
“Adult Social Care provides a confidential, secure setting which respects the individual, helping to preserve people’s dignity”.
Priorities 

  • Recognise, value and support the individual’s choices and the crucial role families and carers play. 
  • Ensure that providers access safeguarding training and sign up to safeguarding policy. 
  • Promote high quality care for people with dual sensory loss at the end of life.
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Equality Impact Assessment

An Equality Impact Assessment (EIA) of the joint sensory strategy has been completed. The approach was supported with recommendations that:

  • Commissioning strategies should be developed with co-design methodology, which enables people who use adult social care services, carers and other stakeholders to drive and inform commissioning decisions.
  • Thorough needs analyses are necessary to identify the needs of different equality groups.
  • To continue with co-design methodology when investigating the feasibility of new types of organisations to deliver integrated sensory services.
  • Ensure close involvement of staff members in any proposed changes and on planning changes.
  • Start an EIA when project planning the feasibility of new types of organisations.
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Recommendations for Commissioning

  • Joint commissioning of high cost low volume services (eg specialist residential care interpreting and 1:1 support workers). 
  • Creation of a basic care pathway from point at which the individual has significant dual loss. 
  • Proactive identification of people with DSL, particularly in the BME community. 
  • Joint basic awareness training in frontline staff. 
  • Include DSL specialist equipment in equipment and telecare commissioning/procurement. 
  • Personal budgets (health and social care) should be tailored to the needs of people with DSL. 
  • Ensure access to employment, education and training services have specifications which enable people with DSL to benefit. 
  • Ensure that commissioning strategies for people with dementia, learning disability, mental health problems reflect the needs of people with DSL. 
  • Establish data monitoring system which identifies people with DSL, the services they receive or choose, the cost and the outcomes, to create a market profile which can be shaped by people with DSL to better fit their needs.
  • Suppliers of services for people with DSL must demonstrate that staff have received suitable specialist training.

 

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Recommendations for needs assessment work

  • Needs of people with DSL from the BME communities in Surrey County Council area.
  • Needs of people with DSL in non-community settings (care homes, long stay hospital wards, supported living, extra care housing).
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Key contacts

Leads within Surrey County Council and Surrey PCT

Key commissioning groups:

  • Surrey Sensory Partnership (meets quarterly)
  • Surrey Dual Sensory Loss Forum
  • Surrey Vision Action Group
  • Surrey Hard of Hearing Group  

 


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Chapter References

1. Surrey County Council and NHS Surrey. Joint commissioning strategy for people with sensory impairment 2011-2015 
http://www.surreycc.gov.uk/?a=482491

2. Department of Health (2009) LAC (DH) (2009) 6 Social Care for deafblind children and adults. London: Department of Health

3. Deaf Blind UK (2009) Causes of deafblindness (WWW) http://www.deafblinduk.org.uk/ accessed 25th January 2012

4. Deaf Blind UK (2008) Cause and cure DeafBlind: People’s experience of the NHS. London: DeafBlind UK

5. Sense (2007) Local authority survey (WWW) http://www.sense.org.uk/help_and_advice/social_services/deafblind_guidance/survey accessed 25th January 2012

6. Deaf Blind UK (2007) Good practice guide. Supporting deafblind people from BME communities. Peterborough: Deaf Blind UK


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Signed off by

 
Colin Rowett, Senior Commissioning Manager- Adult Social Care, Surrey County Council

If you have any feedback/comments please send it to jsnafeedback@surreycc.gov.uk

 

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Please read this chapter in conjunction with the following.



Updated: 30 June 2014 | Owner: Luke Marsh
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