Valuing People’s Oral HealthA good practice guide for improving the oral health of disabled children and adults

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Valuing People’s Oral Health: A good practice guide for improving the oral health of disabled children and adults

Tony JennerDental and Eye Care DivisionDirectorate of Commissioning and System ManagementDepartment of Health, New King’s Beam House, 22 Upper Ground,London SE1 9BW020 7633 4247

Department of Health/Dental and Eye Care Services

Choosing Better Oral Health: An oral health plan for EnglandDelivering Better Oral Health: An evidence-based toolkit for prevention.

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21 November 2007

PCT CEs, SHA CEs, Care Trust CEs, Directors of Adult SSs, PCT PEC Chairs, Directors of Children‘s SSs, Consultants in Dental Public Health,General Dental Practitioners, Salaried Primary Dental Care Dentists, DentalCare Professionals, Directors of Commissioning.

Directors of PH, Allied Health Professionals, GPs

Best practice guidance to improve oral health in disabled children and adults.This document builds on the principles within Choosing Better Oral Health and uses the evidence-based approach within Delivering Better Oral Healthas a guide to assist all who provide and commission dental services forpeople with disabilities.

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Valuing People’s Oral HealthA good practice guide for improving the oral health of disabled children and adults

Contents

Foreword by the Chief Dental Officer of England 1Executive summary 3Equality Impact Assessment 6

Introduction 8Causes of poor oral health and principles of good practice 13Improving oral health – principles of good practice 19Improving oral health – making it happen 23Good practice 27

Appendix 1: Provision of oral care for disabled children and adults 31Appendix 2: Dental care exemplar for a disabled child 33Appendix 3: References, and further reading and resources 38Appendix 4: Glossary 42Appendix 5: Working group members 44

This document is the third in a series ofsupplementary guidancedocuments following onfrom the publication of

Choosing Better Oral Health: An oral healthplan for England. We pointed out in thisplan that, despite the very encouragingimprovement in oral health in England,there remain very marked inequalities in oralhealth. Vulnerable groups in particular arecertainly more at risk from poor oral health.

We know that children and adults withdisabilities and people with mental illnesstend to have fewer teeth, more untreateddecay and more periodontal disease thansociety at large. However, disabled peoplehave the same entitlement to good oralhealth as the rest of the population. We therefore commissioned an expertgroup of stakeholders to look specifically atthe oral health needs of disabled people andproduce guidance on how oral health couldbe improved for these vulnerable groups.This document does not cover treatmentprovision but is designed to support primarycare trusts (PCTs) and their advisers in theirneeds assessment and commissioning ofpreventive oral health services.

Although not focusing just on oral healthimprovement in children and adults withlearning disabilities, but more on disabledpeople in general, Valuing People’s OralHealth carries forward into oral health many

of the key principles in Valuing People, theGovernment’s White Paper on learningdisability, hence the title that we have givento this document.

The working group took particular note of the resources recently made available toPCTs and dental practices through theevidence-based toolkit Delivering BetterOral Health. The preventive guidance inValuing People’s Oral Health concurs fullywith that published in the toolkit.

The NHS has a responsibility to ensure theequality of provision of care to all groups insociety and I am sure that, if implementedcorrectly, the guidance within this documentwill be of great help to both PCTs and theirdental contractors in improving the oralhealth of their local disabled residents.

I should particularly like to thank ColetteBridgman who chaired the working group,Clare Jones who worked very hard tocollate the content and all the members ofthe working group, specialist societies andassociations whose input has been sovaluable in producing such an excellentresource.

Barry CockcroftChief Dental Officer

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Foreword by the Chief Dental Officerof England

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Executive summary

* In 2004, the Standing Dental Advisory Committee completed its review of the dental specialties and made therecommendation that the General Dental Council should consider the establishment of a new specialty, that of special care dentistry.

1 A time of change and reform is also a timeof opportunity. The publication of thissupplement to Choosing Better Oral Health(Department of Health, 2005b) is timely. It can inform and influence the emergingand strengthened commissioning role ofprimary care trusts (PCTs). It is intended toinfluence the provision of key actions, oralhealth programmes and services required to improve and secure oral health fordisabled children and adults.

2 Choosing Health: Making healthy choiceseasier (Department of Health, 2004b)acknowledged that some people havedifficulty using the health informationavailable to them because they suffer fromlearning or physical disabilities. It advised, asbelow, that new primary care arrangementswill be important in helping those withchronic or multiple medical conditions, ordisabilities, to make the most of their health:‘Most… are able to maintain reasonablegeneral health with support from others.With assistance in developing their skillsthey can take greater control of their ownhealth, and their lives.’

3 Disabled children and adults have the sameentitlement to good oral health as the restof the population. This inclusive descriptioncovers large numbers of client groups andwithin each group there will be a ‘pyramidspectrum’ of need and dependency, with

limited numbers of people at the highestlevel of need and dependency. Oral healthis an important factor in overall health andwell-being. Good oral health can promotegood communication, good nutrition,positive self-esteem and can lead to areduction or elimination of discomfort fromthe teeth or mouth. Poor oral health canreduce a person’s ability to consumenutritious food, affect self-image andconfidence, and cause significant pain,which a person with an impairment ordisability may not be able to communicate.The benefits of good oral health can beunder-estimated; good oral healthempowers disabled children and adults,giving them the confidence to enable themto reach their full potential in participatingin all aspects of society.

4 These groups of people also have an equalright to responsive oral health services. For some, this requires that additional actionand support is in place to overcome barriers.At the same time as taking action toimprove oral health, it is important to valueand develop competence in provision of oralhealthcare to these groups throughresearch, consistent advice, professionaltraining and provision of specialist care (for example paediatric dentistry and specialcare dentistry services*) to meet identifiedneeds. Treatment of preventable dentaldiseases is costly to all involved, not only for

Valuing People’s Oral Health: A good practice guide for improving the oral health of disabled children and adults

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the PCTs and specialist services, but also forthe patients and the parents and carers ofdisabled children and adults, who may haveto take time off from employment and fundtransport to accompany patients forassessment and treatment.

5 Oral health needs to become integratedinto holistic health policy at all levels andshould be included in every individual care plan. Oral health issues are oftenoverlooked; doctors and dieticians, forexample, do not always think about the oralhealth implications of the medication anddiets they prescribe and advise, nor do theyalways know the control measures thatcould be taken to minimise harm when suchmedication or diets are essential. Effectiveintegration of oral health into themainstream health agenda is required toensure that oral health issues are notomitted or dealt with separately and seen as ‘the dentist’s problem’. Oral health iseveryone’s business.

Key recommendations

6 The key recommendations of thissupplement are as follows:

Assess need through local surveys> Carry out routine oral health needs

assessments of disabled children andadults in line with population surveys(paragraphs 13–15).

> Disabled children and adults, and thoseinvolved in their care, need to receive the

necessary information, advice, support andresources so that they have the bestopportunity to achieve and maintainoptimal oral health (paragraph 27).

Design and implement effective preventiveactions and programmes> These programmes should be informed by

the evidence (paragraphs 29–31).

> Preventive actions and programmesshould be consistent with therecommendations of Delivering BetterOral Health: An evidence-based toolkitfor prevention (Department of Health,2007) (paragraph 31).

Consistency of messages across all healthand social care boundaries> It is best practice for all health and social

care professionals to provide ‘at-risk’groups of patients, and their carers, withthe same positive oral health educationmessages (paragraphs 24 and 28).

> Use national support groups to promoteconsistent oral health messages andensure that up-to-date information isavailable for local branches (paragraph 24).

Build competence through training andsharing of knowledge> It is good practice for personnel involved

in the care of disabled children and adultsto receive appropriate training and forthem to be provided with informationabout services available and preventiveactions that work (paragraph 28).

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Include oral health in every care plan> It is best practice for children and adults

with an impairment or disability to have a comprehensive oral health care planembedded within their overall health plan(paragraphs 28 and 42).

> A local champion for oral health can beresponsible for putting systems andprocesses into place so that oral healthcare plans are followed and that disabledchildren and adults have access topreventive and treatment services whenrequired (paragraph 27).

Responsive, needs-led treatment services> Commission accessible, prevention-

focused primary care services (paragraphs38, 40–42 and 43).

> Commission timely, responsive, needs-ledspecialist care (paragraphs 39 and 43).

Information for people whose firstlanguage is not English> Provide multilingual information or

translation as appropriate (paragraphs 28 and 43).

Executive summary

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Equality Impact Assessment

1 Valuing People’s Oral Health complementsthe Government’s oral health plan forEngland, Choosing Better Oral Health and,as such, is specifically concerned withpreventing dental disease in thosevulnerable people who consider themselvesto be disabled, as well as specific groupswithin this population, for example thosewho are considered to have learningdisabilities. Its aim is to promote equality of opportunity by ensuring that disabledpeople and their carers receive appropriateadvice on how to prevent oral diseases. It does not cover the availability orappropriateness of treatment modalities fordisabled people as this is available fromother sources (British Society for Disabilityand Oral Health, 2000 and 2001).

2 An equality screening was undertaken ofthe Valuing People’s Oral Health policyprogramme and, following this, a full Equality Impact Assessment was carried out. In general, it was not felt that the guidancewithin the document would lead todiscrimination against any societal groupsnor would lead to public concern in any way.The following specific issues were reviewed.

Age

3 The physiology of oral disease means that oralhealth needs are different between childrenand adults with or without disabilities;therefore, the approach to oral health mustvary according to the patient’s age. ValuingPeople’s Oral Health clearly distinguishes

the differing preventive approaches acrossage groups to ensure equitable outcomes.

Disability

4 There is published evidence that disabledpeople are at risk from higher levels of oralhealth need. This best practice guidancespecifically addresses oral health needs indisabled people and makes evidence-basedrecommendations about how oral healthmay be improved.

Race

5 We recognise that a disproportionately highnumber of people from black and minorityethnic (BME) groups, including disabledpeople within these groups, live in areas ofhigh social need, which is directly correlatedwith poor oral health. For this reason, theChief Dental Officer is establishing amulticultural working group with the aim ofproducing, in spring 2008, a best practiceguidance document for improving oral healthin BME groups. Key issues that impact onoral health in these areas – such as diet,smoking and the use of smokeless tobaccoproducts – will be covered in this document.Valuing People’s Oral Health recognisesthat, in providing preventive advice fordisabled people, the fact that English maynot be their first language needs to be takeninto consideration, including the availabilityof interpreters, and the importance of advicebooklets and information being available in anumber of relevant languages.

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Equality Impact Assessment

Potential for benefit

6 We believe that this guidance document has a high potential for benefit and will bewelcomed by disabled people and theircarers. The preventive advice is based onevidence-based information within therecently published preventive toolkit,Delivering Better Oral Health. If PCTsaccept the recommendations in this reportand commission preventive care, in theshort term we would expect to find a muchgreater emphasis on health improvement inthese groups, and in the longer term wewould expect to see improved oral healthmeasured against baseline data.

Evaluation

7 PCTs are bound by statute, when carryingout their functions, to have due regard for the need to eliminate unlawfuldiscrimination and to promote equality interms of disability, race and gender, andmust bear these duties in mind whenimplementing the recommendations withinValuing People’s Oral Health. They need toensure that there is appropriate evaluationof all programmes aimed at improving theoral health of disabled people. Strategichealth authorities (SHAs) may also wish toevaluate the extent to which PCTs haveadopted the recommendations set out inthe document and, in the longer term, whatimpact these have had on oral health withindisabled groups in their communities.

Next steps

Collecting information8 PCTs will want to collect local

epidemiological data in order to undertakeappropriate oral health needs assessment as part of their commissioning of dental care services.

Evidence of improvement9 The best practice guidance contained in this

document is based on evidence-basedguidance produced in Delivering Better OralHealth. It will work if implementedappropriately. In order to assess the impacton oral health in disabled groups, specificbaseline information will need to becollected as part of the routine oral healthepidemiological programmes co-ordinatedby the Public Health Observatories.

10 The equality screening and Equality Impact Assessment were undertaken by Tony Jenner, Deputy Chief Dental Officer,Department of Health and validated byDavid Lye, Head of Dental and Eye CareServices, Department of Health.

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Introduction

1 Oral health is important to the health andwell-being of disabled children and adults.This supplement to Choosing Better OralHealth (Department of Health, 2005b) setsout to inform actions and advice required at every level and across organisationalboundaries to prevent oral disease and protect and secure oral health for these groups.

2 Many oral diseases are preventable;however, it is important to acknowledgethat certain circumstances can render anindividual more susceptible to developingoral health problems. Actions are needed to create conditions that support andencourage good oral health.

3 Oral health in the UK has improveddramatically over the last 25 years,irrespective of class or geographical location.However, inequalities still exist, withcommunities that live in deprived areas,including the disproportionate number ofpeople from BME backgrounds living inthese areas, suffering more oral healthproblems. Those families that have therequisite social skills are often able to accesscare and respond to the preventivemessages, but others may not. It isimportant to bear in mind that oral healthstatus can be affected by the socialenvironment. Additionally, what is oftenoverlooked is the issue of ‘healthcareoverload’ where some parents/carers ofdisabled children and adults may have tojuggle many different appointments in

various care settings; this may result in themprioritising other commitments over oralhealthcare, leading to missed or cancelleddental appointments.

4 In addition to the influence of the socialenvironment, some disabled children andadults may have problems in that they andtheir carers often need help to implementbehaviours which will reduce the prevalenceof the two most common problems – dentalcaries and periodontal disease.

5 The ideal preventive messages for ‘at-risk’groups are clear, namely:

> begin brushing with a family strengthfluoride toothpaste as the first teeth erupt.Children (including younger ones) at ahigh decay risk, such as those with an impairment or disability, should usetoothpaste containing 1350–1500 ppm(parts per million) fluoride. Children underthe age of three should use only a smearof toothpaste, while those aged three andover should only use a pea-sized amount.Toothbrushing should be supervised by anadult to prevent eating or licking oftoothpaste at least until the age of seven.In disabled children, supervised brushingmay need to continue beyond this age,depending on the individuals’ dexterityand independence;

> continue with regular, twice-daily brushingusing a family fluoride toothpaste (orpastes with higher fluoride concentrations,if appropriate);

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Introduction

> promote recommended breastfeeding(www.breastfeeding.nhs.uk) and weaningpractices – see the leaflet on Weaning(Department of Health, 2005a);

> ensure that night-time bottles arediscontinued by 12 months of age;

> reduce both the frequency and amount of added sugars consumed (dietarysupplements should preferably be given at mealtimes);

> ensure that long-term medication is sugar-free, wherever possible;

> ensure that supplements to alleviate thesymptoms of dry mouth are provided,should this condition develop;

> maintain optimal denture hygiene, asappropriate; and

> access primary dental care services atappropriate intervals to receive evidence-informed preventive care and advice.

6 It is important to recognise that disabledchildren and adults (both those with alifelong disability, and those who acquired adisability later in life) and their carers mayencounter difficulties in implementing thesegood practices.

7 The preventive messages are essentiallystraightforward and can be delivered byeveryone in contact with these groups. Inaddition, the parents and carers of at-riskindividuals can be followed up to ensurethat the appropriate education andresources are being provided, and that key

actions to protect and improve oral healthare being implemented. The fundamentaltask is to build a robust preventiveprogramme to ensure that disabled childrenand adults maintain optimal oral health.

8 The vast majority of care and support isprovided in the home setting by parentsand carers. It is here that the preventiveadvice given is converted into actions,incorporated into daily routines, and has the greatest impact. It is therefore vital forPCTs to make sure that all health and socialcare providers are delivering consistent,evidence-informed preventive actions andadvice to improve oral health.

9 As most dental treatment is provided inprimary care, PCTs can ensure that priority is given to at-risk groups by embeddingappropriate preventive programmes into local oral health strategies, in addition to ensuring that responsive, high-qualityprimary and secondary care dental servicesare in place when required. Achieving thisrequires that PCTs and dentists worktogether with other local stakeholders.

10 Some disabled children and adults canpresent challenges to primary andsecondary care providers. Delivering aquality service to children and adults whomay have poor understanding, uncontrolledmovements, limited mouth opening, poorposture or limited mobility, who mayexperience tiredness during treatment orhave medical problems, presents a range of difficulties and barriers.

11 This document is designed to complementChoosing Better Oral Health and should be a useful resource for commissioningmanagers, professional advisers, health,education and care professionals, and forservice users and carers, to assist them infocusing on preventing oral disease andensuring that dental services are of a highquality and responsive to the needs ofchildren and adults with an impairment or disability.

12 The Commissioning Tool for Special CareDentistry (BSDH, 2006), produced by theBritish Society for Disability and Oral Health(BSDH) and funded by the Department ofHealth, was published in December 2006and should be considered alongside thissupplement to assist in the development ofresponsive quality services.

Overview

13 Planning for actions to improve the oralhealth of disabled children and adults willinvolve an assessment of the level of need

found in these groups, compared with theirnon-disabled counterparts.

14 To enable planning of robust, effective oralhealth programmes for disabled childrenand adults, it is important to haveknowledge of the prevalence and incidenceof different impairments, and informationconcerning the epidemiology of oral diseasein these at-risk groups. However, historicalepidemiological studies, such as the ten-yearly national dental health surveys ofchildren and adults and the annual children’sdental health surveys co-ordinated by theNHS and British Association for the Study of Community Dentistry (BASCD), have not routinely gathered information fromdisabled children and adults. There is,therefore, a necessity for PCTs to carry outoral health needs assessments for thesegroups to facilitate the development ofinclusive strategies that best serve the whole population.

15 A proportional estimate of the at-riskpopulation may initially be more importantthan calculating absolute numbers; this datacan help to inform commissioners withrespect to the types of health promotion(and input required) and the serviceprovision necessary. Table 1 suggests amenu of information sources that PCTs mayfind helpful to provide these estimates fortheir own population.

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Introduction

Numbers withdisability (this dependson thedefinition ofdisability)

Local multi-agency database ofchildren with an impairment ordisability – held by social services.

Record of children with statements of special educational needs in a year cohort – this could beextrapolated to show numbers for all aged 5–16 years.

Numbers known to disabled children’s team.

General estimate that 3% of childrenhave a disability – see Together FromThe Start.1

Some areas will have health authority-run disability databases for children.

Extrapolate from child register.

Learning disability partnerships mayhold registers listing numbers ofadults with learning disabilities –estimated at between 1.3% and3.5% of the population.

Mental health registers.

Older persons review.2

Dentaltreatmentneeds

Local surveys of 5-year-olds and Year 6 children – PCT-based dental services (PCTDS) and national reports.3, 4

Surveillance and local surveys ofchildren in special needs schools –PCTDS.

Interpolation from national ChildDental Health Survey.6

Local pilot surveys of adult groups –PCTDS (contact The DentalObservatory, Preston PCT, PrestonBusiness Centre, Watling Street,Fulwood, Preston PR2 8DY, Tel: 01772 645626).

Interpolation from national AdultDental Health Survey.5

Impact ofdisability anddelivery oftreatments

This involves an assessment of the degree of difficulty in carrying out dentaltreatment, based on the individual’s impairment or disability and the impactthis has on providing a responsive service.

Table 1: Examples of information sources available

For children and adolescents For adults

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Views ofpatients and the public

Report of North West Stakeholder Day.7

Views reported in Together From The Start.

Local qualitative surveys or opinion from user groups, patient panels.

Local family forums.

Contact a Family, a charity for families with disabled children.8

Consult with organisations supporting BME disability groups and identifyingwith local race and religious issues.

Notes to Table 11 Department for Education and Skills/Department of Health (2003). Together From The Start – Practical guidance for professionals

working with disabled children (birth to third birthday) and their families.www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4007526

2 Department of Health National Working Group for Older People (2005). Meeting the challenges of oral health for older people: a strategic review. Gerodontology 22(SI): 2–48.

3 Pitts NB, Boyles J, Nugent ZJ et al. (2006). The dental caries experience of 11-year-old children in Great Britain. Surveys co-ordinated by the British Association for the Study of Community Dentistry in 2004/05. Community Dental Health 23: 44–57.

4 Pitts NB, Boyles J, Nugent ZJ et al. (2005). The dental caries experience of 5-year-old children in England and Wales (2003/04)and Scotland (2002/03). Surveys co-ordinated by the British Association for the Study of Community Dentistry. CommunityDental Health 22: 46–56.

5 Office for National Statistics (2000). Adult Dental Health Survey: Oral Health in the United Kingdom 1998.www.statistics.gov.uk/pdfdir/dh0999.pdf

6 Office for National Statistics (2003). Decline in obvious decay in children’s permanent teeth. Children’s Dental Health Survey 2003.Preliminary Findings. www.statistics.gov.uk/children/dentalhealth

7 Oral Health Care for People with Special Needs. Summary of main areas of concern. Report arising from stakeholder conference, 30 November 2005. Copies are available from nancy.moss@nhs.net

8 Contact a Family (2005). Open wide? Families’ experiences of accessing dental care for their disabled child. www.cafamily.org.uk

Table 1: Examples of information sources available (continued)

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16 Some congenital conditions and syndromesmay adversely affect dental developmentand compromise oral health. Despiterigorous preventive programmes andintervention, it is possible that therequirement for dental treatment serviceswill be unavoidable for some. However,good oral health is an achievable goal forthe majority of disabled children and adults.

Factors affecting oral health

17 In order to improve oral health and reduceinequalities, the underlying causes of dentaldiseases need to be challenged. Siximportant factors involved in the aetiologyof dental diseases have been described inChoosing Better Oral Health.

Diet and nutrition> Frequent, high sugar consumption is

the most significant factor in developingdental decay.

> A healthy, nutritious diet, which is low infat, sugar and salt, and includes five ormore portions of fruit and vegetables a

day is essential for maintaining goodgeneral health; this will, in turn, impactupon dental health as snacking on fruitand vegetables rather than cariogenicfoods will help to reduce the risk of dental decay.

> Excessive consumption of acidic,carbonated drinks (including those whichare labelled ‘diet’ and ‘sugar-free’ andthose which are spring water-based) canlead to erosion of teeth resulting in painand the need for treatment.

Oral hygiene> Failure to remove dental plaque by regular

toothbrushing compromises the health ofthe periodontal tissues, which support theteeth. Oral hygiene routines are bestestablished in early life as part of generalgrooming and cleanliness.

> In addition to brushing natural teeth,dentures need to be removed andeffectively cleaned on a daily basis to maintain the health of the oralenvironment.

Exposure to fluorides> Optimal exposure to fluoride promotes

remineralisation of tooth surfacesfollowing acid attack, and is highlyeffective in preventing tooth decay.

> Twice-daily use of family fluoridetoothpastes and regular application offluoride varnish are evidence-basedmeasures which can prevent and controldental decay. Children, including younger

Causes of poor oral health andprinciples of good practice

ones at a higher decay risk, and thosewith an impairment or disability shoulduse toothpaste containing 1350–1500ppm fluoride. Children under the age of three should use only a smear oftoothpaste, while those aged three andover should only use a pea-sized amount.Toothbrushing should be supervised by anadult to prevent eating or licking oftoothpaste at least until the age of seven.In disabled children, supervised brushingmay need to continue beyond this age,depending on individuals’ dexterity andindependence.

> Water fluoridation is an effective and safepublic health intervention which has beenshown to reduce the prevalence of decayin populations.

Tobacco and alcohol> Use of tobacco, including chewing

tobacco, paan and betel, is an aetiologicalfactor in periodontal disease and is thegreatest risk factor for oral cancer.

> Excessive alcohol consumption is a furtherrisk for oral cancer and, when combinedwith smoking, has a synergistic effect.

Injury> Dental injuries can cause pain and

facial disfigurement, which can adversely affect an individual’s self-confidence andself-image.

> Treatment for dental injuries may beprolonged and expensive.

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Causes of poor oral health and principles of good practice

> Epileptic seizures and falls due to dyspraxiaand impaired mobility increase the risk oftraumatic dental injury, which is likely torequire urgent assessment and treatment.

Other medical conditions> A wide range of both acute and chronic

medical conditions can adversely affectoral health.

18 Children and adults with chronic medicalconditions are at greater risk of dentaldisease, and any oral health problems theydevelop are likely to be more complicated to treat.

19 Often, people who are disabled requirespecial diets or may be malnourished, whichwill affect their general health and immuneresponse. Feeding times may be prolongedand high-sugar diets may be deemednecessary in order to maximise calorieintake. They may require frequent intake ofsmall meals and snacks, and these will oftenbe high in simple carbohydrates, which areeasily digested. Medical interventionsrequired by a child or adult may therefore,at times, be in direct conflict with thosedietary measures known to promote goodoral health.

20 In addition to high-sugar diets, medicationtaken by those with disabilities may containlarge quantities of sugar and/or be acidic;the frequency and timing of intake willimpact upon the individual’s oral health andthe medicine may also have side effects,including reduced salivary flow.

21 Establishing and maintaining an effectiveoral hygiene regime may prove difficult inat-risk groups, and carers may not fullycomprehend the importance of persistingwith routine toothbrushing using a familyfluoride toothpaste. Poor compliance andpronounced gag reflexes may hinderattempts at maintaining a routine.Dependent adults who are reliant on carersfor preventive home care may thereforeexperience difficulties in maintaining thebest achievable oral health. Parents andcarers may be concerned about interveningfor adults who, because of their impairment or disability, are unable to provide consent and who may, in some instances, requireclinical holding. It is important that they arereassured that they are acting in theirclient’s best interests by implementingeffective preventive oral home care.

22 Additional problems that increase the risk of dental disease include gastric reflux,vomiting and rumination disorder, all ofwhich can cause dental erosion andassociated discomfort. Non-oral feeders will experience specific complications inmaintaining optimal oral health and comfort.

23 Furthermore, a lack of dental informationand poor dental attendance associated withthose who have chronic medical conditionsor a disability will impact on their oralhealth. Providing education and resources toenable those with a disability to minimise oreliminate these factors in their own lives,either by themselves or with the support ofcarers and family, will reduce the incidenceof undesirable dental conditions such ascaries, periodontal disease, trauma and oralcancer, in addition to reducing the risk ofsystemic illness.

24 Primary dental healthcare professionals havea limited role in the broader socialframework of disabled children and adultsand therefore need to work in partnership,across professional boundaries, with a rangeof different social and healthcareorganisations and agencies. Involvement ofa wide range of ‘partners in oral health’ (Table 2) requires co-ordination to ensurethat consistent oral health messages andeducation are delivered and appropriateresources are provided when necessary (see Appendix 1).

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Causes of poor oral health and principles of good practice

Table 2: Partners in oral health

Health professionals For example:> midwives> health visitors> district and practice nurses> dieticians> specialist nurse practitioners> pharmacists> school nurse advisers> speech and language therapists> doctors> hospice staff> learning disability nurses.

Childcare and education services For example:> childminders> pre-school and nursery staff> teachers> school governors> parent and teacher associations> catering staff.

Social care professionals For example:> carers> catering staff in residential care

establishments and day-care centres> learning disability teams> mental health teams.

Voluntary sector For example:> national and local support groups for disabled

children and adults.

25 PCTs need to ensure that their oral health strategy provides disabled childrenand adults with access to the services they need to enjoy optimal oral health. A multiprofessional approach, working in partnerships across all boundaries, willrequire procurement of services from avariety of healthcare professionals and localauthority groups, as detailed in Table 2. A preventive oral health framework fordisabled children and adults, embedded intothe strategy, will:

> improve the oral health and well-being of these groups;

> reduce oral health inequalities;

> ensure a better experience of care;

> reduce the need for treatment of dentaldecay and periodontal disease;

> contribute to the wider aim ofsafeguarding and promoting the welfareof children and vulnerable adults; and

> ensure the early detection of oral cancer.

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26 Choosing Better Oral Health outlined howprogress against its objectives could bemeasured through improvements in the oralhealth of the population and increaseddelivery of high-quality preventive dentalservices. These are important benchmarksfor disabled children and adults.

27 The following principles may be helpful for PCTs wishing to improve the oral healthof disabled children and adults in thepopulations they serve:

> Each PCT should consider having a namedindividual who has responsibility forchampioning better oral health. Thisperson could be, depending on localcircumstances, a consultant in dentalpublic health, a clinical director for PCTdental services, a primary care dentist oranother dental care professional.

> The appointed individual withresponsibility for improving oral health inthe population and commissioners ofprimary dental care services should set the care of disabled children and adults as a priority.

> The oral health of at-risk groups can onlybe improved if action is taken at all levels;this includes action at population level (for example adding fluoride to a watersupply), and targeted approaches, healthpromotion and education programmes.

> All health and social care agencies should recognise the actions that can both damage or protect oral health, and commission appropriate general and specialist services (for examplepaediatric dentistry and special caredentistry services*) with a preventiveethos. The appointed individual shouldwork at all necessary levels.

> When developing services, it is importantto have input from a specialist clinicianand involvement from patients and carerswho will access the services.

> The PCT oral health champion could leadon the formation and maintenance of

Improving oral health – principles of good practice

* In 2004, the Standing Dental Advisory Committee completed its review of the dental specialties and made therecommendation that the General Dental Council should consider the establishment of a new specialty, that of special care dentistry.

suitable partnerships between the health,social and educational sectors.

28 PCT-led partnerships should be responsiblefor:

> ensuring that all health, social care,education and voluntary sector groupworkers acknowledge that oral health iseveryone’s business, especially for at-riskdisabled children and adults. It is not justthe responsibility of the dental profession;

> including positive action for achieving and maintaining good oral health in allhealthcare plans for disabled children and adults, that is an oral health planembedded within the care plan;

> providing ongoing, evidence-informedtraining for all health and social careworkers to allow them to recognise theimportance of good oral health for thisgroup, which will allow them to:

– give carers and clients the correct advicewith regard to oral care;

– support good habits with regard toweaning, feeding, daily oral care,sensible medication regimes and theoptimal use of fluoride;

– provide care in such a way that harm isminimised with regard to prescribingmedicines, supplements and dietaryadvice;

– recognise when a prompt and appropriatereferral to specialist care should bemade; and

– ensure that appropriate protocols andsystems are in place, so that this canhappen;

> disseminating information about theprimary and secondary dental care servicesavailable, and how to access them, andensuring that multilingual information or atranslation service is available as appropriate;and

> providing all primary dental care clinicianswith sufficient information to ensure thathigh-quality care is given for this groupand that they are able to deliver allevidence-informed proactive prevention.

Evidence-informed actions

29 Choosing Better Oral Health documented a range of good practice to improve andprotect oral health. Details were presentedfor the underlying risk factors for oraldisease and a target population and keypartners were listed for every action point. Water fluoridation is an effective publichealth measure and has been proved to bemore beneficial than fluoride toothpastealone. All of this is relevant for disabledchildren and adults but additional action

Valuing People’s Oral Health: A good practice guide for improving the oral health of disabled children and adults

20

21

Improving oral health – principles of good practice

focused at this target group would includethe actions outlined below.

ChildrenPlease refer to paragraph 5 for detailedadvice regarding the use of fluoridetoothpastes.

> Provision of fluoride toothpaste withadvice and encouragement for its use.

> Supervised brushing with fluoridetoothpaste in nurseries and schools.

> Professional application of fluoride varnish,three to four times yearly.

> Encouragement of twice-daily, supervisedbrushing with fluoride toothpaste.

> Professional application of fissure sealantsto all susceptible pits and fissures.

Adults> Professional application of fluoride varnish,

twice yearly.

> Encouragement of twice-daily, supervisedbrushing with family fluoride toothpastewith a minimum of 1350–1500 ppmfluoride (higher concentrations 2800 ppmor 5000 ppm as appropriate).

> Provision of supplements to aid dry mouth.

30 These actions will not come about unless arobust oral care pathway is in place for allat-risk children and adults.

31 Resources are available to assist primarydental care teams to improve oral healthwithin new contracting arrangements andinclude Delivering Better Oral Health: Anevidence-based toolkit for prevention(Department of Health, 2007). PCTs needto be aware of this evidence andperformance manage providers to ensurethat services for disabled children and adultsdeliver evidence-based preventive measuresand actions such as the professionalapplication of fluoride varnish.

National Service Framework forChildren, Young People andMaternity Services

32 The National Service Framework forChildren, Young People and MaternityServices (NSF) (Department of Health,2004a) was published alongside supportingmaterial, which included a series ofexemplar patient journeys. While oral health issues were documented, exemplars,which could address these specifically, werenot included. As the framework andapproach is familiar through the NSFprogramme, an exemplar has beenproduced to illustrate prevention and oralhealth in action (Appendix 2).

Valuing People’s Oral Health: A good practice guide for improving the oral health of disabled children and adults

22

33 The NSF oral health themes include theimportance of responding to the views ofchildren and their parents; involving them in key decisions; providing earlieridentification; diagnosis and intervention;and delivering flexible, child-centred, holisticcare. They demonstrate how care can beintegrated between agencies and over timeand can be sensitive to individual’s changing.

34 It is intended that the exemplar could beuseful to stimulate local debate and assistmulti-agency partners to re-evaluate theway they collaborate on, commission anddeliver oral health interventions and servicesfor these groups. It could be used as amultidisciplinary training tool for staffworking with children and young people to raise awareness of specific issues andstimulate discussion, and could be helpful incanvassing the views of disabled childrenand adults on specific issues, such as goodand ‘not so good’ aspects of the currentservice.

35 This section puts the guidance in thecontext of wider NHS reforms; it caninform commissioners of the preventiveactions and responsive services with apreventive ethos required for disabledchildren and adults.

36 The main functions of a PCT as detailed bythe Department of Health are:

> engaging with its local population toimprove health and well-being;

> commissioning a comprehensive andequitable range of high-quality, responsiveand efficient services, within allocatedresources, across all service sectors; and

> directly providing high-quality, responsiveand efficient services where this gives best value.

PCTs need to assess their progress inachieving these functions with regard tooral health and dental services for disabledchildren and adults.

37 Health Reform in England: Update andCommissioning Framework (Department ofHealth, 2006c) provided an update abouthealth reform and focused oncommissioning NHS services. It set out aframework detailing key changes designedto strengthen commissioning and ensurethat commissioning drives health reformand improved health and healthcare. A vision ‘to develop a patient-led NHS thatuses available resources as effectively andfairly as possible to promote health, reduce

inequalities and deliver the best and safestpossible healthcare’ was stated. It isacknowledged that health services are not‘one size fits all’. It is necessary to improveand secure oral health for children andadults with impairments and disability inorder to meet the stated objectives. The wider objectives are to:

> improve health and well-being and reducehealth inequalities and social exclusion;

> secure a comprehensive range ofpreventive actions and services;

> improve the quality, effectiveness andefficiency of preventive programmes andservices;

> increase choice for patients and ensure abetter experience of care through greaterresponsiveness to people’s needs; and

> achieve best value within the resourcesprovided.

38 The Commissioning Framework for Health and Well-being (Department of Health,2007b) signals a clear commitment togreater choice and innovation. Its key aimsare to achieve:

> a shift towards services sensitive to need,which maintain independence and dignity;

> a reorientation towards promoting healthand investing now to reduce future illhealth; and

> a stronger focus on commissioningservices that will achieve better health,

23

Improving oral health – making it happen

with everyone working to promoteinclusion and tackle inequalities.

39 Overall, a patient-centred approach isrequired, as detailed in the Department ofHealth publications Commissioning aPatient-led NHS (2005c) and Our Health,Our Care, Our Say (2006a). SHAs willmanage the effectiveness of this approachthrough their oversight.

40 A model of best practice for the integrationof specialist and generalist care to providespecial care dentistry can be found on the BSDH website (www.bsdh.org.uk.) This model demonstrates the importance ofcommissioning specialist dental services andidentifies many other partners that may beinvolved in a patient care pathway.

41 PCTs and dentists will need to worktogether. Effective joint planning andcommissioning is at the heart of improvingoutcomes for the oral care of vulnerablegroups. PCTs need to acknowledge andmanage the challenges that primary caredental practitioners face in accepting andtreating some disabled children and adults,for example longer appointment times maybe required. Regard will also need to bepaid to the preventive needs of thesepatients. PCTs should, where appropriate,develop a local ‘clinical network’ suitable for the delivery of necessary services.Dissemination of information with respectto these services is best practice as is all carebeing provided by locally agreed protocolsand policies, developed following evidence-

based national guidelines and standards ofcare and outcomes performance managedby PCTs and overseen by SHAs.

42 Although dental teams will be involved inoral health promotion, prevention anddelivery of care, they also have animportant role in developing knowledge andskills for other workforce groups to ensurethat disabled children and adults receiveconsistent, appropriate, evidence-informedadvice and actions to improve and secureoral health regardless of setting. All dentalteams should have knowledge of the needsand requirements of the Mental CapacityAct 2005 (MCA) and the DisabilityDiscrimination Act (DDA) 1995.

Valuing People’s Oral Health: A good practice guide for improving the oral health of disabled children and adults

24

43 The MCA provides a statutory frameworkto empower and protect people who arenot able to make their own decisions. It makes it clear who can take decisions, in which situations, and how they should go about this. It also enables people to plan ahead for a time when they may losecapacity. It is important that dental teamsare aware of the MCA to ensure thatpeople with more complex disabilities donot find themselves denied access totreatment because dentists believe theycannot treat without overt consent. Theprinciples underpinning the Act include a presumption of capacity, unless provenotherwise, to enable adults to makedecisions on their own behalf; and arequirement to maximise decision-makingcapacity so that adults who requireadditional support to enable them to maketheir own decisions receive this, rather than being assessed as lacking capacity.Additionally, individuals retain the right to make what might be seen asunconventional decisions, and anything thatis done for (or on the behalf) of people wholack capacity must be in their best interestsand should be least restrictive of their basicrights and freedoms.

44 The DDA sets out the legal requirements ofservice providers to ensure that practices,policies or procedures do not make itimpossible or unreasonably difficult to use a service. There is a requirement to provideauxiliary aids or services and to overcomephysical features that may present a barrier

to disabled people wishing to use a service.The Disability Equality Duty sets out thelegal obligation of all public sectororganisations to promote equality ofopportunity for disabled people. In additionto ensuring that disabled people are treatedfairly, the law requires organisations toinclude them in decision making and impactassessments.

45 General dental practices are the focal pointof a fully integrated preventive carepathway. The critical issue is appropriatepatient care and, for some disabled childrenand adults, specialist care may be indicated.However, there is a need to ensure that thelocal dental practice is available andaccessible to those who do not requirespecialist care routinely. Inclusion in allaspects of society is vitally important andaccessing dental care locally is no exception.

46 In addition to commissioning preventiveinterventions to improve oral health, PCTsneed to consider the following key actionsto secure and improve oral health whenplanning dental care services for childrenand adults with an impairment or disability:

> Provision of accessible, responsive primarycare dental services and monitoring ofthese to ensure that evidence-informedpreventive intervention is being delivered.

> Provision of responsive care, involving aspecialist when necessary.

> Timely access to secondary and tertiarycare when required.

25

Improving oral health – making it happen

> Provision of general anaesthetic servicesand sedation services which meet theneeds of disabled children and adults.These services need to be responsive tothose with acute pain and who require an urgent general anaesthetic.

> Involvement of users and carers, andadvice from appropriate specialists indeveloping services.

> Provision of responsive, urgent and out-of-hours care.

> Provision of clear, accessible and, whereappropriate, multilingual information. A range of technologies are available tohelp with this; links to help organisationsimprove their communication can befound on the Valuing People website(http://valuingpeople.gov.uk/dynamic/valuingpeople77.jsp).

> Integrated care pathways highlightingspecial circumstances.

> Oral healthcare included in all care plans.

Valuing People’s Oral Health: A good practice guide for improving the oral health of disabled children and adults

26

Case study 1: Oral healthinformation for parents of chronicallyill children

47 A Vocational Dental Practitioner Project,which was carried out by Bracknell ForestPCT Community Dental Service in 2006,involved paediatricians and dieticiansworking to encourage consistent dentalhealth education advice for children with chronic illnesses or on high-sugar/calorie diets.

48 The project aimed to:

> assess and provide evidence of the need for preventive advice aimed at thetarget group;

> create a tool (in the form of an oral health education leaflet) for dieticians,paediatricians and other healthprofessionals to use when discussing oral health with parents;

> educate parents about the importance ofgood oral health from an early stage incases where children were chronically ill or required special diets;

> encourage communication of consistentmessages from all dental and medicalservices; and

> produce local recommendations onprevention strategies and future projectsto increase multidisciplinary involvement in dental health.

49 Stages:

> Open discussions with paediatricians and dieticians.

> Assessment of the health informationgiven out routinely by paediatricians anddieticians, and the risk that this maycontravene preventive dental advice.

> Acquisition of local data pertaining tochildren aged 0–17 treated in dieteticsdepartments (number treated, what they were treated for and where theywere treated).

> Finally, creation of an oral healtheducation leaflet aimed specifically atpreventing dental disease in chronically ill children and those requiring high-sugar diets.

50 It was evident that children with chronicmedical conditions, or those requiringdietary intervention, were a population at high risk of developing dental disease.The health leaflets available regardingdietary advice for children requiring high-sugar/calorie diets or those with chronicmedical conditions contained informationthat increased the risk of dental disease;little or no preventive dental advice wasoffered in conjunction with the distributionof these.

27

Good practice

51 The health professionals involved in theproject were keen to provide effective oralhealth advice to their patients, whom theyfelt would greatly benefit from a moremultiprofessional approach.

52 The ensuing oral health education leaflet,which was created with the support ofdieticians and paediatricians, became aneducational tool for all healthcareprofessionals involved in children’s care; the main message, aimed at the parents and carers of children with chronic diseaseor requiring high-calorie diets, is thatprevention of dental disease is possiblewithout changing the underlying dietaryadvice from dieticians or paediatricians.

53 The leaflet was distributed in paediatricoutpatient departments and wards wheremost patient contacts were made.

54 The leaflet can be accessed electronically at:www.heatherwoodandwexham.nhs.uk/patient_info/information_leaflets/dental.pdf

Case study 2: The importance of oralcare in the overall healthcare plan

55 A 37-year-old man with moderate learningdisabilities was referred, by his social worker,to the local PCT dental service (PCTDS) at Central Lancashire PCT, which has a department of special care dentistry, for a dental examination.

56 Clinical examination confirmed the patientto be free of dental caries. However, oralhygiene was very poor, with an extensiveaccumulation of plaque and calculuscovering all tooth surfaces.

57 The carer, who supported the patient,assured the dentist that his client wasprovided with a toothbrush and toothpastetwice a day. Unfortunately, the patient wasnot able to brush his teeth without activesupport and intervention. The carer wasalerted to this problem and to the potentialfor deterioration of his client’s dental health.

58 Further to this visit, the patient’s healthcareplan was amended to include a section onoral health. The support the patient requiredfrom the carer was detailed and the carerwas provided with training in tooth brushingand oral hygiene education, in order tosupport his client.

59 A review appointment two weeks laterconfirmed a significant improvement in thepatient’s oral hygiene. Dental examinationsat regular intervals, including reinforcementof preventive advice, can be provided withinlocal primary care dental services.

60 This case highlights the importance ofincorporating oral care into all healthcareplans.

Valuing People’s Oral Health: A good practice guide for improving the oral health of disabled children and adults

28

Case study 3: Suggestions receivedfrom the lay-user perspective toassist with service planning

61 Suggestions received include:

> giving patients and their parents/carersclear advice in plain, simple languageregarding preventive actions they can take;

> involving patients with disabilities andtheir carers in the discussions and decisionsregarding management of appointmentschedules to offer choice and avoid‘healthcare overload’;

> setting up systems to ensure that patientswho have received specialist care arefollowed up and not ‘lost’ on return toprimary care practitioners;

> encouraging patient-based evaluation – to enable identification of the ‘goodexperiences’, as well as those areas thathaven’t worked so well;

> being mindful of the amount ofpaperwork sent out to the patient withappointment cards etc. Ensure that this isuser friendly with clear, simple instructionsabout how it should be completed;

> providing a photograph of the surgery,dentist and dental team to helpparents/carers prepare patients for theexperience of attending the clinic;

> including a section for provision of details of ‘abilities’, as well as relevant ‘disabilities’,on referral forms;

> ensuring that all members of the dentalteam know how the disability affects thepatient; and

> ensuring that flowcharts illustratingtreatment pathways cover a maximum of one side of A4 and are user friendlywith simple details.

Case study 4: Example of goodpreventive practice

62 An epidemiological survey in Manchesterrevealed that five-year-olds attendingspecial needs schools had far higher levelsof dental decay and tooth extractions dueto disease than children attending localmainstream schools.

63 Subsequently, a supervised brushing schemewas introduced to all special schools in thelocal area and toothbrushes, brush holdersand family fluoride toothpaste (1350–1500ppm fluoride) were provided for all childrento use on a daily basis. Every school day, allthe children had their teeth brushed, orwere supervised and helped while they didthis for themselves. Paste was dispensed byschool staff with only a small pea-sized blobbeing put onto the brush for those agedunder seven. School staff used theopportunity to teach about numbers,colours, listening to instructions, andstarting and completing a task.

29

Good practice

64 In order to reinforce the importance oftwice-daily brushing at home, gift bags of family fluoride toothpaste, a brush and aleaflet were provided for each child to takehome for each longer school holiday.

65 The schools involved are supportive of thescheme because they had been keen to do something to improve the poor dentalhealth of the pupils in their care, andparents are in favour as their children havegenerally become more accepting of thedaily routine of tooth brushing.

66 This scheme is evidence based, usingmaterials in such a way as to maximise theireffect while minimising risk, and it providesa means by which educational messagescan be put into action. In this way it isunlikely to increase inequalities in health.

Valuing People’s Oral Health: A good practice guide for improving the oral health of disabled children and adults

30

31

The common risk approach recognises thatchronic non-communicable diseases such as, forexample, obesity, heart disease and oral diseaseshare a set of common risks, conditions andfactors. It is essential that those outside thedental team are involved in the promotion ofgood oral health.

Improving oral health for people with disabilitiesis not just brought about by the dental team.Oral health promotion and prevention of oraldisease should be reinforced by healtheducation and social care professionals as partof the general care of this group of people. For example, dieticians must be aware of theimpact on a child’s teeth when they advisehigh-calorie supplements for children; carers ofadults with learning disabilities must be awarethat if they do not brush the teeth of an adultwith a learning disability who is unable to do ithim/herself, they will allow the development of disease. Once oral disease develops, it maybe very much more difficult to treat in peoplewith limited understanding and complexmedical conditions.

Factors influencing changes in the populationof disabled children and adults which will havean impact on the provision of dental servicesand oral care for these at-risk groups include:

> lower mortality rates of children with complexand multiple disabilities and increasingnumbers surviving into adulthood;

> higher than average morbidity rates ofchildren born prematurely;

> increased life expectancy of people withdisabilities;

> the increasing prevalence of disability amongsome ethnic minority groups;

> improvements in medical care leading toincreased survival rates for those with chronicmedical problems, impairment or disability;

> increasing numbers of people with learningdisabilities facing the challenges of older life;

> an increasing number of older people who aremore likely to develop disabilities coincidentalor consequent to their age;

Appendix 1: Provision of oral care fordisabled children and adults

32

> increasing numbers of patients with complexor chronic medical conditions, impairment or disability, which presents a challenge toservice providers;

> maintaining oral health and complexrestorations, which becomes a huge challengewhen the status quo of personal oral care isaffected by disability;

> a cultural value shift away from the acceptabilityof total tooth loss as part of the ageingprocess to retaining the natural dentition;

> a demographic shift from the loss of teeth toincreased retention of natural teeth so thatmore teeth are at risk of dental disease in theolder population;

> changing public expectations regarding theimportance of appearance, possibly leading toincreased requests for implants, orthodonticsand cosmetic dentistry from disabled people;

> increasing numbers of patients with multi-faceted medical histories or disabilities andimpairments, who are unsuitable for day-casesurgery and require inpatient admission fordental treatment;

> increased awareness of the availability ofconscious sedation, possibly leading toincreased requests for dental treatmentsedation services from disabled people;

> post-radiotherapy effects in those treated forhead and neck cancers, which can result inrampant decay and post-extractionosteomyelitis; and

> the need to provide consistency as patientsprogress from children’s services to adult services.

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PD, 2

000.

34

Den

tal

jour

ney

Chi

ldre

n’s

NSF

Ev

iden

ce/l

inks

stan

dard

Prim

ary

scho

ol

year

s

Ref

erra

l to

sp

ecia

list

dent

al s

ervi

ce

The

dent

al n

urse

exp

lain

s th

at r

esou

rces

, whi

ch in

clud

e a

prin

ted

shee

t of

car

toon

s ill

ustr

atin

g pr

oced

ures

, are

ava

ilabl

e at

the

chi

ldde

velo

pmen

t ce

ntre

, and

rin

gs a

head

to

ensu

re t

hat

they

are

avai

labl

e at

the

ir ne

xt v

isit.

Mem

bers

of

the

dent

al t

eam

use

the

‘aut

ism

’ sec

tion

of a

lear

ning

pro

gram

me

to u

pdat

e th

eir

know

ledg

e.

At

the

next

app

oint

men

t, d

espi

te c

aref

ul in

trod

uctio

n an

dex

plan

atio

n of

new

equ

ipm

ent

and

proc

edur

es, J

ake

beco

mes

dist

ress

ed a

t th

e so

und

of t

he s

uctio

n. It

see

ms

clea

r th

at h

e w

illne

ed m

ore

time

befo

re h

e is

rea

dy f

or t

his

proc

edur

e. T

he d

entis

tdi

scus

ses

this

with

his

par

ents

and

it is

agr

eed

to r

efer

him

to

the

loca

l PC

T de

ntal

ser

vice

, whe

re s

taff

are

kno

wn

to h

ave

expe

rtis

e in

trea

ting

anxi

ous

child

ren

and

thos

e w

ith a

n im

pairm

ent

or d

isab

ility

.

Stan

dard

s 3

and

8 –

pare

nts

invo

lved

inde

cisi

ons

affe

ctin

gth

eir

child

ren.

Hom

efirs

t C

omm

unity

Tru

st,

1999

.

The

Hos

pita

l Com

mun

icat

ion

Boo

k.

Fisk

e an

d D

avie

s, 2

005.

PCT

dent

al s

ervi

ces

prov

ide

dent

al c

are

for

child

ren

and

adul

ts w

ith s

peci

al c

are

need

s.

An

appo

intm

ent

is m

ade

for

Jake

to

atte

nd a

spe

cial

ist

paed

iatr

icde

ntis

t. J

ake’

s pa

rent

s ar

e in

vite

d to

com

plet

e an

d re

turn

a f

orm

pr

ior

to h

is a

ppoi

ntm

ent

to m

ake

the

dent

ist

awar

e of

any

asp

ects

of

den

tal c

are

that

may

dis

tres

s hi

m.

Aft

er s

ever

al v

isits

, Jak

e ha

s hi

s lo

wer

per

man

ent

mol

ars

fissu

rese

aled

but

the

upp

er t

eeth

can

not

be s

eale

d su

cces

sful

ly.

App

oint

men

ts a

re m

ade

to r

einf

orce

adv

ice

on p

reve

ntin

g de

cay

and

for

fluor

ide

appl

icat

ions

.

At

a su

bseq

uent

vis

it, c

linic

al in

terv

entio

n is

req

uire

d, a

s Ja

ke h

assu

stai

ned

trau

ma

to a

n an

terio

r to

oth.

A g

ener

al a

naes

thet

ic (

GA

) is

req

uire

d fo

r ne

cess

ary

trea

tmen

t.

Stan

dard

1 –

ear

lydi

agno

sis

and

early

inte

rven

tion.

Nat

iona

l Aut

istic

Soc

iety

, Den

tal

Car

e an

d A

utis

m (

leaf

let)

.

(Als

o av

aila

ble

in F

iske

and

Dav

ies,

200

5.)

35

Den

tal

jour

ney

Chi

ldre

n’s

NSF

Ev

iden

ce/l

inks

stan

dard

Ref

erra

l fo

r de

ntal

tr

eatm

ent

unde

r G

A

The

spec

ialis

t de

ntis

t is

abl

e to

pla

ce J

ake

dire

ctly

on

the

wai

ting

list

for

dent

al t

reat

men

t un

der

GA

at

the

loca

l hos

pita

l. A

sug

gest

edtr

eatm

ent

plan

is d

iscu

ssed

with

Jak

e, h

is p

aren

ts a

nd t

he s

peci

alis

tpa

edia

tric

den

tist

who

will

car

ry o

ut t

he t

reat

men

t.

A f

urth

er a

ppoi

ntm

ent

is m

ade

with

the

den

tal t

eam

for

pre

vent

ive

advi

ce a

nd c

are.

The

tea

m is

aw

are

that

Jak

e is

cur

rent

ly s

eein

g a

com

mun

ity d

ietic

ian

due

to t

he e

lect

roni

c in

form

atio

n-sh

arin

g in

dex.

The

team

can

be

conf

iden

t th

at c

onsis

tent

, app

ropr

iate

adv

ice

is gi

ven.

The

team

is a

lso

awar

e th

at c

o-or

dina

ted,

sup

ervi

sed

toot

hbru

shin

gpr

ogra

mm

es a

re in

pla

ce in

Jak

e’s

scho

ol a

nd t

hat

he is

enc

oura

ged

to p

artic

ipat

e in

the

se.

Jake

has

his

tre

atm

ent

carr

ied

out

unde

r G

A a

s a

hosp

ital d

ay c

ase.

Staf

f un

ders

tand

and

sup

port

his

com

mun

icat

ion

need

s. T

hedi

scha

rge

sum

mar

ies

are

sent

to

med

ical

and

den

tal p

rimar

y ca

repr

actit

ione

rs.

The

spec

ialis

t de

ntis

t ag

rees

to

prov

ide

shar

ed c

are

with

the

GD

P if

nece

ssar

y w

ith r

egar

d to

the

tra

umat

ised

too

th. J

ake

will

con

tinue

to

atte

nd h

is G

DP

ever

y si

x m

onth

s.

Stan

dard

8 –

co

-ord

inat

ion

ofhe

alth

care

and

seam

less

inte

grat

edw

orki

ng.

Stan

dard

7 –

qua

lity

care

for

dis

able

dch

ildre

n in

hos

pita

l.

Stan

dard

3 –

info

rmat

ion

shar

ing.

Onl

ine

info

rmat

ion

shar

ing

indi

ces

aim

to

impr

ove

com

mun

icat

ion

betw

een

prof

essi

onal

s w

ho p

rovi

dese

rvic

es f

or c

hild

ren.

Fo

r m

ore

info

rmat

ion

and

case

stu

dies

fro

m t

railb

laze

r lo

cal a

utho

ritie

s, s

ee:

ww

w.e

very

child

mat

ters

.gov

.uk

Or

see

an e

xam

ple

such

as

Shef

field

Saf

etyN

ET:

ww

w.s

heff

ield

safe

tyne

t.go

v.uk

36

Den

tal

jour

ney

Chi

ldre

n’s

NSF

Ev

iden

ce/l

inks

stan

dard

Seco

ndar

y sc

hool

yea

rs

and

shar

ed

care

wit

h G

DP

Tran

siti

on t

o ad

ult

serv

ices

Jake

con

tinue

s to

att

end

his

prim

ary

dent

al c

are

prac

titio

ner

ever

y si

x m

onth

s. H

e bu

ilds

up a

goo

d re

latio

nshi

p w

ith h

is G

DP

and,

intim

e, is

abl

e to

hav

e si

mpl

e pr

oced

ures

suc

h as

rad

iogr

aphs

with

out

diff

icul

ty. C

ompl

icat

ions

with

his

tra

umat

ised

too

th r

equi

re a

per

iod

of s

hare

d ca

re w

ith s

peci

al c

are

dent

istr

y.

His

den

tists

beg

in t

o di

scus

s w

ith h

is p

aren

ts t

he d

iffer

ent

optio

ns

for

his

futu

re d

enta

l car

e. J

ake

is in

volv

ed in

the

dis

cuss

ions

and

isin

vite

d to

exp

ress

his

ow

n pr

efer

ence

.

Stan

dard

8 –

plan

ning

for

tran

sitio

n to

adu

ltse

rvic

es.

Jake

con

tinue

s to

att

end

for

chec

k-up

s w

ith h

is G

DP.

At

16 h

e is

pres

crib

ed 2

800

ppm

flu

orid

e to

othp

aste

and

flu

orid

e va

rnis

hap

plic

atio

n is

con

tinue

d. H

is k

ey w

orke

r co

ntin

ues

to s

uppo

rt a

ndim

plem

ent

advi

ce g

iven

.

The

mul

tidis

cipl

inar

y ap

proa

ch t

o pr

even

tive

man

agem

ent

and

the

co-o

rdin

atio

n of

car

e by

an

oral

hea

lth c

ham

pion

min

imis

e Ja

ke’s

risk

of d

evel

opin

g de

ntal

car

ies.

Stan

dard

s 4

and

8 –

acce

ss t

o ag

e-ap

prop

riate

ser

vice

sre

spon

sive

to

the

youn

g pe

rson

’sne

eds.

Dep

artm

ent

of H

ealth

, 200

6ban

d 20

06d.

37

38

Appendix 3: References, and furtherreading and resourcesReferences

British Association for Community Child Health,Child Development and Disability Group (2000).Standards for Child Development Services: A guide for commissioners and providers.www.bacdis.org.uk/publications/standards_CDS.pdf

British Society for Disability and Oral Health(2000). Guidelines for Oral Health Care forPeople with a Physical Disability. Report ofBSDH Working Group.www.bsdh.org.uk/guidelines/physical.pdf

British Society for Disability and Oral Health(2001). Clinical Guidelines and IntegratedCare Pathways for the Oral Health Care ofPeople with Learning Disabilities.www.bsdh.org.uk/guidelines/Dianatru.pdf

British Society for Disability and Oral Health(2006). Commissioning Tool for Special Care Dentistry. www.bsdh.org.uk/misc/Commissioning_Tool_for_Special_Care_Dentistry_FINAL_MARCH_2007.pdf

Department of Health (2004a). NationalService Framework for Children, Young Peopleand Maternity Services.www.dh.gov.uk/en/Policyandguidance/Healthandsocialcaretopics/ChildrenServices/Childrenservicesinformation/DH_4089111

Department of Health (2004b). ChoosingHealth: Making healthy choices easier.www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4094550

Department of Health (2005a). Weaning (leaflet). www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4117080

Department of Health (2005b) Choosing BetterOral Health: An oral health plan for England.www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4123251

Department of Health (2005c). Commissioninga Patient-led NHS.www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4116716

Department of Health (2006a). Our Health,Our Care, Our say: A new direction forcommunity services.www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4127453

Department of Health (2006b). Growing upready for emerging adulthood.www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4137427

Department of Health (2006c). Health Reformin England: Update and commissioningframework.www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4137226

39

Department of Health (2006d). Transition:getting it right for young people. Improvingthe transition of young people with long termconditions from children’s to adult health services.www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4132145Need a reference to Valuing People

Department of Health (2001). Valuing People:A New Strategy for Learning Disability for the21st Century. The first white paper on learningdisability for thirty years and set out anambitious and challenging programme ofaction for improving services.www.dh.gov.uk/en/Policyandguidance/SocialCare/Deliveringadultsocialcare/Learningdisabilities/DH_4032080

Department of Health (2007a). DeliveringBetter Oral Health: An evidence-based toolkitfor prevention.www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_078742

Department of Health (2007b). CommissioningFramework for Health and Well-being.www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_072604

Every Child Matters. Change for Children.www.everychildmatters.gov.uk/

Fiske J and Davies R (2005). ‘Special CareDentistry: An interactive learning programmefor the dental team’ (CD-Rom). Copies can beobtained from Smile-on Ltd (Tel: 020 74008989 or email info@smile-on.com).

Homefirst Community Trust (1999). Going tothe Dentist. Available from BallymenaCommunity Dental Service, Spruce House,Braid Valley Site, Cushendall Road, BallymenaBT43 6HL.

The Hospital Communication Book (2006).Developed on behalf of the Learning DisabilityPartnership Board in Surrey. http://valuingpeople.gov.uk/dynamic/valuingpeople145.jsp

National Autistic Society. Dental Care and Autism.www.nas.org.uk/content/1/c4/86/15/dentalcareandautismfinal2.pdf

Nunn JH, Murray JJ, Smallridge J and BSPD(2000). British Society of Paediatric Dentistry: a policy document on fissure sealants inpaediatric dentistry. International Journal ofPaediatric Dentistry 10(2): 174–7.

Richards D (2006). Topical fluoride guidance.Evidence Based Dentistry 7: 62–4.

Scottish Intercollegiate Guidelines Network(2005). Guideline 83 Prevention andmanagement of dental decay in the pre-school child. A national clinical guideline.www.sign.ac.uk/pdf/sign83.pdf

Sheffield SafetyNET. Integrated PracticeProgramme. www.sheffieldsafetynet.gov.uk/

Uribe S (2004). Sealants recommended toprevent caries. Evidence Based Dentistry5(4): 93–4.

Appendix 3

Valuing People’s Oral Health: A good practice guide for improving the oral health of disabled children and adults

40

Further reading and resources

British Society of Paediatric Dentistry (2005).Consultants and Specialists in PaediatricDentistry.www.bspd.co.uk/publication-23.pdf

Brushing for Life initiative (launched September 2006).www.gnn.gov.uk/environment/fullDetail.asp?ReleaseID=227081&NewsAreaID=2

Commission for Equality and Human Rights.Detailed guidance relating to the DisabilityEquality Duty.www.equalityhumanrights.com/en/forbusinessesandorganisation/publicauthorities/disabilityequalityd/pages/default.aspx

Dental Care and Autism. Patient/parent adviceleaflet aimed at dental care for people (mainlychildren) with autism here:www.nas.org.uk/nas/jsp/polopoly.jsp?d=1421&a=8614

Department of Health (2004, updated 2006).Standards for Better Health.www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4086665

Disability Discrimination Act 1995. www.opsi.gov.uk/acts/acts1995/1995050.htm

Fiske J, Griffiths J, Jamieson R et al. (1999).Guidelines for oral health care for long-staypatients and residents. Gerodontology 16:204–209.

Fiske J and Lewis D (2000). The Developmentof Standards for Domiciliary Dental CareServices: Guidelines and Recommendations. A report from the British Society for Disabilityand Oral Health Working Party.www.bsdh.org.uk/guidelines/domicil.pdf

Griffiths J, Jones V, Leeman I et al. (2000).Oral Health Care for People with MentalHealth Problems: Guidelines andRecommendations. Report of BSDH Working Group. www.bsdh.org.uk/guidelines/mental.pdf

Griffiths J (2002). British Society for Disabilityand Oral Health guidelines for oral health carefor people with a physical disability. Journal ofDisability and Oral Health 3(2): 51–8.

Griffiths J and Lewis D (2002). British Societyfor Disability and Oral Health guidelines fororal care of patients who are dependent,dysphagic or critically ill. Journal of Disabilityand Oral Health 3(1): 30–33.

Health and Social Care (Community Healthand Standards) Act 2003.www.opsi.gov.uk/ACTS/acts2003/20030043.htm

Makaton Vocabulary Development Project, 31 Firwood Drive, Camberley, Surrey GU15 3QD. Tel: 01276 61390.www.makaton.org/

Mental Capacity Act 2005.www.opsi.gov.uk/acts/acts2005/20050009.htm

41

National Institute for Health and ClinicalExcellence (2004; expected review dateOctober 2008). Dental Recall – Recall intervalbetween routine dental examinations.www.nice.org.uk/guidance/index.jsp?action=byID&r=true&o=10952

National Institute for Health and ClinicalExcellence (2006). Brief interventions andreferral for smoking cessation in primary careand other settings. Public health interventionguidance.www.nice.org.uk/nicemedia/pdf/SMOKING-ALS2_FINAL.pdf

Pitts N/Department of Health (2006). ClinicalPathways Project – Dental Health ServicesResearch Unit, University of Dundee: The NHSoral health assessment final report.www.dh.gov.uk/assetRoot/04/13/43/71/04134371.pdf

Scottish Intercollegiate Guidelines Network(2000). Guideline 47 Preventing dental cariesin children at high caries risk. Targetedprevention of dental caries in the permanentteeth of 6–16 year olds presenting for dental care.www.sign.ac.uk/guidelines/fulltext/47/index.html

Steele P (1999). Going to the dentist.www.homefirst.n-i.nhs.uk/

Valuing People Support Team website.http://valuingpeople.gov.uk/index.jsp

Appendix 3

42

Appendix 4: Glossary

BASCD British Association for the Study of Community Dentistry. www.bascd.org

BDA British Dental Association.www.bda.org

BSDH British Society for Disability and Oral Health. www.bsdh.org.uk

BSPD British Society of Paediatric Dentistry.www.bspd.co.uk

DDA Disability Discrimination Act 1995.www.opsi.gov.uk/acts/acts1995/1995050.htm

Fissure sealant Plastic/resin coating applied to the pits and grooves in the tooth surface toprevent decay.

GDP General dental practitioner.

Local champion An ardent supporter of better oral health for those with an impairment or for oral health disability who defends the rights of these vulnerable groups with respect to

access to and provision of evidence-based preventive programmes andappropriate, responsive dental services. This person could be, depending onlocal circumstances, a consultant in dental public health, a clinical director forPCT dental services, a primary care dentist, or other.

NICE National Institute for Health and Clinical Excellence.www.nice.org.uk

NSF National Service Framework. www.dh.gov.uk/en/Policyandguidance/HealthandSocialcaretopics/DH_4070951

43

Paediatric A dentist who has completed specialist-level training and who has trained dentistry for an additional two years. They are examined in their higher professional consultant training – an additional requirement to that of specialists.

Paediatric A dentist with specialised knowledge and experience in the oral and dental dentistry care of children. Many have additional qualifications and have demonstrated a specialist minimum of three years’ specialist-level training (or demonstrable equivalent) in

order to be included in the Paediatric Dentistry Specialist Register held by theGeneral Dental Council.

PCT Primary care trust.

PCTDS Primary care trust-based dental services.

ppm Parts per million, for example of fluoride. A measure used to denote thefluoride content of toothpastes and mouthwashes.

RCS Royal College of Surgeons of England. The college supervises specialist trainingin approved posts and examines trainees to ensure the highest possiblestandards.www.rcseng.ac.uk

SIGN Scottish Intercollegiate Guidelines Network.www.sign.ac.uk

Synergistic Two or more factors working together, so that the total effect is greater thanthe separate effect of the individual factors.

Appendix 4

44

Appendix 5: Working group members

Colette Bridgman Consultant in Dental Public Health, Oldham and Salford Primary (Chair) Care Trusts

Clare Jones Specialist Registrar in Dental Public Health, University of Manchester(Collator)

Anthony Blinkhorn Professor of Oral Health, University of Manchester

Amit Bose Policy Manager, Department of Health

Vanita Brooks British Society for Disability and Oral Health

Gill Davies British Association for the Study of Community Dentistry

Stephen Fayle British Society of Paediatric Dentistry

Sue Greening British Society for Disability and Oral Health

Jenny Harris British Society of Paediatric Dentistry

Tony Jenner Deputy Chief Dental Officer, Department of Health

Lisa Kauffmann Consultant Paediatrician, Manchester Primary Care Trust

Selina Master British Society for Disability and Oral Health

Sophy Ratcliffe Vocational Dental Practitioner 2006, Bracknell Forest Primary Care TrustCommunity Dental Service

Jerry Read Project Lead, Oral Health Promotion, Department of Health

Donna Self Lay member

Mark Taylor British Dental Association

Liana Zoitopoulos British Association for the Study of Community Dentistry

© Crown copyright 2007

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