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FINAL DRAFT FOR CONSULTATION

DENTAL CARE FOR INDIVIDUALS WITH LEARNING

DISABILITIES IN WARWICKSHIRE - THEIR VOICE

Research report by Denise Musson and Nick Mellors

Issued 2 March 2012

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EXECUTIVE SUMMARY

It is generally recognised that individuals with learning disabilities tend to have poorer oral hygiene

resulting in tooth decay and gum disease. Clearly nutritional diet plays an important part in this

process where soft sticky foods can be the food of personal preference and due to their desire for

‘sameness’ there is very little variation beyond this diet.

Occasionally some individuals display repetitive actions such as teeth grinding (Bruxism) of teeth

will, over a period of time, have considerable effect. Medication occasionally used for people with

learning disabilities such as anti-convulsants where epilepsy is present, SSRI’s for anxiety or

depression, or even anti-psychotics can all lead to dry mouths and therefore impact adversely upon

dental hygiene.

In addition to potentially having higher dental care needs, these individuals also often have greater

difficulty understanding both oral hygiene and dental care information, accessing services and

coping with the trauma of treatment. This can create a ‘double whammy’ of individuals with greatest

need having the least capacity for prevention or treatment.

This short research project adopted a range of approaches to gather first hand views on the dental

care needs of individuals with learning disabilities including

Interactive workshops

Structured surveys for both individuals and their carers

Case studies on the treatment journeys of individuals

Focus group with local dentists

Collation of examples of good practice

Information sharing with local partnership groups

In total 106 individuals (approx 6% of adults with learning disabilities across Warwickshire) and 31

carers participated in the interactive workshops, structured surveys were carried out with 42

individuals and 31 carers. In addition to input for dental practitioners in the special dental care

service, four dental practitioners took part in the focus group. Additionally the team shared

information with partnership groups at 6 events between November 2011 and February 2012.

In general, individuals and carers expressed high levels of satisfaction in the way they were treated

in their most recent visit to the dentist with 97% of individuals and 92% of their carers considering

they had been “Treated with respect & kindness”.

However individuals with learning disabilities show high levels of phobia around all areas of dental

treatment.

The Smells and Tastes are upsetting - 55%

Loud noises cause distress - 52%

Don’t like injections - 45%

Have difficulty waiting - 38%

Bright lights are disturbing - 36%

Chair movement frightening - 33%

Don’t like being touched - 31%

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Frightened in strange places - 29%

Can’t tell the dentist where it hurts - 29%

This has significant impacts on both their wellbeing and the approach and time needed by their

dentist in treating them. Case studies on the treatment journeys of two individuals with learning

disabilities show the benefit of a patient and supportive approach to overcoming these phobias;

however dental practitioners expressed concerned that changes to the referral process for specialist

dental treatment may result in individuals with strong phobias no longer being able get referrals

without attending a dental clinic, causing then additional distress or not receiving treatment.

The survey also shows the ‘hidden cost’ of carers with over 80% of carers making appointments,

providing transport, attending the appointment with the individual and being actively involved in

supporting the individual. A quarter of carers spoke to the dentist in advance of the appointment to

get more information or share information on the patient. 15% of carers had to take time off work

to attend appointments. Carers identified little advice and support available to them for oral health

or dental treatment and a lack of awareness of the implications for them or the individuals if

appointments or treatment changed at short notice.

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SUMMARY OF RECOMMENDATIONS

Following our first hand engagement with individuals with learning disabilities and their carers we

have developed a set of practical recommendations which build on the experience across

Warwickshire in addressing their needs in a consistent and efficient way. Where new activities have

been recommended we have identified indicative costs, however detailed costings have not been

developed as these would depend on the scope and take up of each recommendation. For each

recommendation we have also identified how quickly it could be implemented:

Quick Wins - could be established or delivered in a matter of weeks of being commissioned

Medium Term - could be established or delivered within 6 months of being commissioned

Long Term / Strategic - would take over 6 months to implement or develop

Further details are contained in the Recommendations section of the report. In summary our

recommendations (in the sequence they developed) are:

R1 – QUICK WIN Developing a programme of education events built around the expertise of

the Special Care Dental Service and New Ideas to be delivered to individuals in community

and care groups across the county. An indicative budget for a 2 hour workshop would be

approximately £200.

R2 - MEDIUM TERM Additionally this programme could be further developed to train

individuals with learning disabilities to pilot a health buddy scheme, where peer advocates

or volunteers receive training to be health buddies to go to dental appointments with

patients. An indicative budget for the pilot could be £2500.

R3 –QUICK WIN Continue the development and promotion of the Special Care Dental

Service oral health courses which received positive feedback from individuals and carers.

R4 - QUICK WIN Build on the success of existing easy to use information packs (as in Case

Study 4) to develop a series of easy read photo based guide to dental hygiene and visiting

the dentist designed and modelled by peer advocates by New Ideas’ Make It Easy Group in

partnership with the Special Care Dental Service. An indicative cost to produce easy

information could be £800

R5 – QUICK WIN Complete the video diary of ‘Ann’s’ treatment in managing her phobias

(Case Study 1) through to her successful treatment. An indicative cost could be £800.

R6 - MEDIUM TERM Development of a Carer’s Checklist - providing information for carers in

setting and attending dental appointments, including the option to provide information for

the dental practice on the special needs or concerns of the patient as a tear-off to the

checklist. An indicative cost could be £600.

R7 - LONG TERM/STRATEGIC Development of a Warwickshire based programme for care

homes and centres to develop their knowledge and adoption of good practice, similar to the

Smile Awards developed in Bedfordshire. An indicative cost to identify the potential for this

programme could be £2,000.

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R8 – QUICK WIN Build on the success of the initial focus group for dental practitioners to

establish one or more (depending on demand and geography) dental practioner focus groups to

share experiences and good practice (eg the benefit of providing patients with learning

disabilities with morning appointments to reduce anxiety). An indicative cost would be £750 per

year per group.

R9 - MEDIUM TERM Building on the focus groups for dental practitioners, develop an event

open to all dental practitioners to raise awareness of the issues facing individuals with learning

disabilities. An indicative cost to develop and stage a one-off event could be £1000.

R10 - MEDIUM TERM Development of an advice pack / communication tool for dental practice

staff(including nursing and reception staff) dealing with the special requirements of individuals

with learning disabilities, tailored to the dental environment. An indicative cost could be £850.

R11 - MEDIUM TERM Additionally the advice pack / communication tool could be supported by

a workshop for dental practice staff to enable them to develop a deeper awareness of the issues

faced by individuals with learning disabilities. An indicative cost to develop and stage each

workshop would be 200.

R12 – QUICK WIN Enable social workers, community & learning disability nurse and carers make

referrals to specialist dental care centres. Within both the professional and carer communities

concern was expressed at the recent decision to change the referral process to specialist centres

with referrals now only accepted from dentists or GPs; as opposed to the previous arrangements

where social workers, community & learning disability nurse and carers have been able to

request a referral. This is creating a barrier to individuals accessing these service as some people

are not registered with a GP, whilst some GPs are perceived to resistant to making referrals -

seeing it as outside of their responsibility. Similarly some individuals are unable to attend a

general dental practice because of access or phobia issues (the particular group the specialist

service looks to support). These additional obstacles are restricting access to the specialist

services needed by individuals with learning disabilities.

R13 - MEDIUM TERM In reviewing available information on the dental health of individuals with

learning disabilities we identified gaps and inconsistencies in the information collected, for

example, in self-directed support plans, health support plans, annual reviews and health checks.

We recommend that a common set of questions on dental health is developed by the Special

Care Dental Service and shared with professional staff across the county. This could be delivered

within existing resources.

R14 - LONG TERM STRATEGIC Although outside the remit of the project and of Warwickshire

LINk, this research has once again highlighted the fact that treatment for individuals with

learning disabilities is typically more time-consuming than ‘standard’ treatments. As dentist’s

standard payments are based on assumptions on the time taken for treatment this has a

negative impact on the availability of dental treatment and the time available to treat

individuals. We recommend that consideration is given to adjusting fees to reflect the additional

time required for the type of positive and caring treatment identified as critical by this research.

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R15 - MEDIUM TERM Although not related to dental care, we did receive positive feedback from

carers about the engagement developed by this project and it was suggested that similar

research would be valuable in enabling the voices of individuals with learning disabilities to be

heard on other health related topics such as optical services. An indicative cost could be

£12,000.

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INTRODUCTION

The number of adults in Warwickshire with moderate to severe learning disabilities is expected to

increase by 9% from 1801 in 2010 to 1971 by the year 2030.

Legislation including the Human Rights Act, the Disability Discrimination Act and the Mental Capacity

Act supports universal, fair, equally accessible, effective and safe health and social care for all those

entitled to receive it, including people with learning disabilities.

Research has demonstrated that people with learning disabilities have greater health needs and

poorer health outcomes than the general population. There is considerable evidence that people

with learning disabilities do not receive the same healthcare as other people and they report more

significant and ongoing health inequalities despite higher rates of mortality and morbidity and they

experience shortfalls in the provision of and access to healthcare. (Healthcare Commission & the

Commission for Social Care Inspection, July 2006, Healthcare for All July 2008, Estimated Prevalence

of people with LD: Victoria Allgar et al British Journal of General Practice 2008)

Furthermore, the 2009/2010 Needs Assessment for Primary Care Dental Services in Warwickshire

(Improving Access to NHS Dentistry – Emerson & Baines) states: “There is evidence that

people/groups in residential care (such as people with a learning disability) are more likely to have

poor oral health and inadequate or restricted access to dental services.”.

The June 2011 report ‘NHS Data Gaps for Learning Disabilities’ highlights that the data return

provided by NHS dental practitioners “does not record disability status either directly or

indirectly…Thus even if it is the case that the majority of people with a learning disability look to the

NHS for dental care, contextual information about the care we would expect to see them receive is

not so readily available.”

In the light of this information Warwickshire LINk engaged with the New Ideas Advocacy, and its

partners at NHS Warwickshire Special Care Dental Service (WSCDS) and ISPB Ltd, to develop a

programme of events and surveys to hear the experiences and needs of people with learning

disabilities and their carers.

This report documents this work, its findings and recommendations.

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METHODOLOGY

We recognised that formal research methodologies traditionally do not enable people with learning

disabilities to fully engage as they typically require participants to have high levels of comprehension

and communication skills in order to both understand the questions and their context, and also to

share their views.

New Ideas Advocacy has developed a positive engagement approach which combines drama with

discussions and information gathering, facilitated by individuals who themselves have learning

disabilities. This approach not only gives individuals a non-challenging forum to have their views and

experiences heard it also provides a vehicle to educate participants, in this case, in oral health.

In order to provide the greatest opportunity for individuals to be heard our approach was to use a

multi-modal approach built around a 2 hour event for individuals and their carers, supplemented

with a more formal survey of carers and a focus group for dental practitioners.

In total 106 individuals (approx 6% of adults with learning disabilities across Warwickshire) and 31

carers participated in the interactive workshops, structured surveys were carried out with 42

individuals and 35 carers.

‘Health Act’ Interactive Workshops

For this project members of ‘Health Act’, the New Ideas peer advocacy group that was formed in

April 2010 to work with the Health Access Team to deliver some learning disability awareness

training to GPs and staff working in the acute setting, researched the issues of oral health and dental

care and produced a short drama encouraging people to visit the dentist.

This was used to introduce the event and focus on the topic of dental care. Two facilitators, both

with learning disabilities, then led a scripted discussion to encourage participants to share their

experiences - good and bad - and ideas for improvement. These were then captured in writing,

supported where necessary, and used in an interactive activity involving putting the comments into

a tooth shaped container and putting the ‘teeth’ into a cartoon mouth. Throughout the event the

New Ideas team provided additional support and facilitation to ensure all participants had the

opportunity to participate and capture their views.

Structured Surveys

Additionally, a simple survey form was used to capture individuals’ views on their feelings about

visiting the dentist. A fuller survey form was used to capture the views of carers (family carers and

paid support workers).

By taking this combined interactive and structured approach the views of 106 individuals with

learning disabilities and 35 carers have been collated for this research.

Case Studies

In addition to this research we also carried out case studies on the experiences of two individuals

with learning disabilities who were being supported in receiving dental treatment. In both cases the

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individuals had strong phobias which had prevented them receiving dental treatment in the past.

With one client we have produced a video diary showing her part of journey through the support

service provided at Orchard Centre, not only does this give a client’s view of the service it could also

be used to help others with learning disabilities become more confident in their use of dental

services.

Also, NHS Warwickshire Special Care Dental Service run a series of Dental Health promotion activities including: Full day courses on oral care for anyone who cares for people with learning disabilities. Courses are provided for service users on oral care systems to promote the ongoing of care is implemented after courses or stand alone health

promotion by seeing individuals at home, engaging parents carers or using buddy systems where service users get peer support.

Dentists and other professionals also refer individuals directly to health promotion. All of these are free to all those people with learning disabilities and carers in the Warwickshire area. During our research we gathered user’s feedback on this service.

Focus Group of Dental Practitioners

During the project our partnership approach generated interest from dental practitioners in the

county; we therefore staged an initial focus group of four dental practitioners to identify potential

issues and barriers to oral health and dental treatment for individuals with learning disabilities.

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SURVEY FINDINGS

Survey feedback from individuals with learning disabilities

Given potential comprehension difficulties it is recognised that form based survey data has potential

for error and inconsistency when completed by individuals with learning disabilities. However we

believe it is important to provide an opportunity for their views to be heard in as many ways as

possible - in some cases survey forms were completed by carers/facilitators in discussion with the

individual.

Despite this scope for inconsistency, the survey results provide a consistent message on the level of

phobias with only 7% of respondents stating they had no fears about going to the dentist.

In expressing their feeling about attending the dentist, concerns expressed were:

The smells and tastes are upsetting - 55%

Loud noises cause distress - 52%

Don’t like injections - 45%

Have difficulty waiting - 38%

Bright lights are disturbing - 36%

Chair movement frightening - 33%

Don’t like being touched - 31%

Frightened in strange places - 29%

Can’t tell the dentist where it hurts - 29%

Expensive - 24%

In this context 17% said they had had a bad visit to the dentist in the past. More positively, when

asked to describe their last visit respondents were very satisfied, including:

Treated with respect & kindness - 97%

Given enough time to explain - 94%

Asked me before doing anything - 94%

Dentist listened to me - 91%

On the subject of communication, a minority (16% or 1 in 6) felt they did not understand what the

dentist was saying or doing.

When asked about making an appointment (recognising that for many people appointment

arrangements would be handled for them by a carer) 24% had been unable to make an appointment

at some time in the last three years. Although not directly comparable, this is significantly higher

than the national average of 7% of adults being unable to make an NHS dental appointment - Access

and barriers to care - a report from the Adult Dental Health Survey 2009. The Health and Social Care

Information Centre. This indicates difficulties with both accessing services and the capacity of those

services.

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Feedback from Family Carers and Support Workers

Carers’ perceptions of the level of phobia differed from the individual’s views. As both carer and individual responses were anonymous it was not possible to compare results to identify where the different perceptions arose. However they still demonstrated high levels of fear:

Don’t like injections - 48% (c/w 45% response by individuals)

Frightened in strange places -33% (29%)

Can’t tell the dentist where it hurts - 33% (29%)

Have difficulty waiting - 26% (38%)

Don’t like being touched - 26% (31%)

Loud noises cause distress - 15% (52%)

Chair movement frightening - 15% (33%)

The Smells and Tastes are upsetting - 7% (55%)

Bright lights are disturbing - 7% (36%)

Expensive - 0% (24%)

When asked to describe their last dental visit carer’s responses were broadly positive (although less so than the individuals)

Treated with respect & kindness - 92% (c/w 97% response by individuals)

Given enough time to explain - 88% (94%)

Asked me before doing anything -88% ( 94%)

Dentist listened to them - 85% (91%)

On the subject of communication, only 69% of carers felts the individual understood what the

dentist was saying or doing (compared with 84% of the individuals views).

Most carers play a significant part in both arranging and attending the appointment.

74% make the appointment on behalf of the individual

26% speak to the dentist ahead of the appointment

7% visit the clinic ahead of the appointment

96% travel with the individual to the appointment (92 by private transport or taxi)

89% wait with the individual

81% go in the clinic with the individual

78% are involved in decisions on treatment

This applies to both family carers and paid support workers.

Additional narrative feedback from carers included:

“My son was afraid of the dentists. The clinic dentist worked with him over a period of time on a weekly basis, from just sitting in “a chair” talking to him, eventually he sat in the dentist’s chair and progressed to eventually having the chair lowered. This took a long time, but Atherstone clinic dentists were brilliant. We hope this service will continue”

“Wish dentist sent regular appointments. Appointments not regular enough”

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“Goes to special needs dentist but due to dentists leaving after short spell the check up appointments are not sent regularly you have to chase them up and usually get answer machine. Therefore no continuity in care.”

“Going to an early appointment makes patient less anxious”

“This dental workshop has been really useful, would it be possible to do another around optical care and optician treatments please”

First hand feedback from individuals with learning disabilities

The most consistent feature of this feedback was the need for people with learning disabilities to

have someone with them when they go to the dentist. This additional support has time and resource

implications for both the individuals and the dental practice; placing more emphasis on good

communications and potentially adding time to the length of a visit where explanations and

discussions have to be repeated to ensure both the patient and their supporter understand the

treatment and any follow up actions.

There was clear positive feedback that individuals felt their dentist treated them with consideration

and respect; providing positive engagement, listening and explaining, and adopting a friendly

approach to their patients. Participants placed emphasis on the patience of the dentist to ensure

they were calm and comfortable. This was clearly valued by the individual patients.

There was less negative feedback with a few complaints about poor engagement but predominantly

about issues which arose when the standard approach failed for some reason (eg equipment not

ready or appointments cancelled). These failures have a disproportionate effect on individuals with

learning disabilities who may be less able to cope with changes to their routine, less able to wait and

less able to access services without aids.

At extreme levels these failures have significant financial and emotional implications for patients and

carers - we were told of one case of a lady who was due to be an in-patient for dental treatment and

her parents were going to give her support. They live in Warrington so had to book time from work

and find accommodation. They arrived in Warwickshire to find the appointment had been cancelled

at the last minute, causing them significant expense and inconvenience and causing their daughter

considerable distress.

When things don’t go well

“When I went to the dentist he didn’t listen to me”

“Dentist won’t tell what happens”

“When I went to the dentist I was scared because I didn’t know what was going on”

“I get confused when appointments change”

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“I was prepared to go to the dentist and when my carer rang to check my appointment had

been cancelled”

“Missed appointment because it was cancelled”

“Have to wait a long time”

“I have to wait too long”

“Door wasn’t wide enough to get wheelchair through”

“Ramp wasn’t put out for wheel chair”

“Door not wide enough for wheelchair”

“Taxi didn’t arrive”

“I have not been to the dentist in a long time and that has made me more nervous”

“I don’t like chair. I don’t feel comfortable about going”

“I don’t like needles”

“I don’t like needles, then the dentist keeps you waiting”

“Doesn’t like anything in his mouth or sitting in the chair - so he sits in own wheelchair”

“Went to dentist and it wasn’t very clean - even the instruments were dirty”

“Once I had the wrong tooth taken out”

“I had to have a tooth out and it was very painful. I heard some horrible noises and there

was some blood. I was scared. My mum was with me but she was scared too”

“I had some teeth out. I was hurt. I had a needle in my hand and in my gum. The dentist

wrote a letter to my sister saying he was sorry he hurt me”

“No help or support, needed it so I can understand what needs doing”

When things go well

Says the dentist is “good” and pointed to his teeth [feedback completed by carer for

individual who cannot communicate verbally]

“My dentist says please when she talks to me. She is polite”

“I had help to go to the dentist with Orchard Centre She explained things”

“The dentist helped me feel relaxed and my mum went with me. The dentist explained

things well and was gentle”

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“It was great. I trusted him”

“I like my dentist because she is very friendly and speaks very clear and she gives me a paper

coat which is very useful”

“Dentist spoke to me and explained what he was going to do”

“I went to the dentist and they treated me good. They are kind and helpful”

“The dentist was very good to me. They explained what they were going to do”

“My dentist was nice to me. He listened, explained what he was going to do”

“The dentist listened to me. He made me feel comfortable. He was very kind to me. He told

me about what treatment he was going to do”

“Dental visit was to have all remaining teeth out at hospital. They were very good at

explaining what was to happen and they looked after me very well afterwards. They made

me a cup of tea”

“They treated me with respect”

“She was very good. She spoke to me alot. She explained everything to me. She looked at my

gums”

“I went to the dentist and had a tooth out. They told me to only eat soft food afterwards and

not to eat straightaway. I had support to go. I was aware during the time they took the tooth

out. They explained this to me before the procedure”

“Had a filling. Dentist was friendly. Dentist explained what they were doing”

“I don’t mind going to the dentist, she talks kindly to me”

“Dentist people quite kind”

“I enjoyed going to the dentist she was nice”

“I have always been made to feel calm at the dentist”

“They looked after me well”

“I have always been made to feel comfortable”

“The dentist made me feel calm, she is friendly”

“My dentist has always made me feel happy about my treatment”

“I am happy to go to the dentist because they make me feel comfortable and talk to me. I

have a man dentist”

“They are very kind. They give me plenty of time. They talk to me and smile”

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“I had a good visit to the dentist. I clean my teeth every day 2 mins, take my time brushing

my teeth”

“They told me what’s the matter with my teeth and they sorted them out. Had an x-ray”

“I had a good visit to the dentist; clean my teeth every day for 2 minutes”

“It’s important to go for check-ups. The dentist is kind, looks after me. My dentist is a lady”

“My dentist is gentle, she doesn’t hurt me”

“I have a really nice lady dentist. She doesn’t hurt me when she is cleaning my teeth”

“It was easy. I have my gums checked and they told me everything was fine”

“Cleaned and brushed teeth for me”

“Have no pain”

“I’m happy that dentist fixed my teeth”

“My dentist is very good. He makes my teeth white. I had some goggles on. Checked my

teeth”

“I don’t mind going to the dentist. It has to be done because your teeth might go bad and fall

out. I like my dentist, she speaks to me nicely, her name is [dentist’s forename] She told my

carer I needed more encouragement to clean my teeth and she reminded me about how

important it is to clean your teeth”

“I am happy to go to dentist because they get rid of my pain. I have a lady dentist”

“I just like going because they stop my teeth from hurting. Always two ladies there”

“Going to the dentist was good because they gave me a check up and they took my tooth

out”

“Had a good visit”

“Told me I was brushing my teeth very well”

“I have had good visits to the dentist every six months”

“My dentist is a lady”

What helps make things go well

“My mum going with me helps me go to the dentist”

“Carers support me at the dentist”

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“Taking my care worker with me is a help”

“Take a friend or staff member”

“Someone to go with”

“Key workers help me make appointments and go with me”

“Taking my sister helps me go to the dentist”

“Taking my son helps me go to the dentist”

“One of the carers to come with me”

“Mum”

“Carers”

“I like my sister to go with me”

“My mum comes with me to the dentist”

“My mum or dad comes with me to the dentist”

“Go with mum”

“A carer to come with me”

“I am happy when my sister was there with me”

“Carer gives me lift to the dentist”

“For someone I trust to take me and bring me back”

“If I have someone to go with me”

“Knowing someone I know is going with me makes it easier”

“I like my support worker to go to the dentist with me and be with me when I have any

treatment”

“I like my support worker to be with me when I have my check up and treatment. I don’t like

waiting a long time. I don’t like the waiting room”

“Having someone with me. Having things explained to me. The dentist being gentle. The

dentist being patient with me”

“Patience with the patient”

“Lots of time. Talk to me, tell me what she is doing”

“Paracetamol”

“Anaesthetic, no pain”

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“Be gentle and kind, don’t use so much gas, don’t like waiting long”

“I am always nervous when I go to the dentist but the lady dentist makes me feel calmer”

“Calm piped music”

“Transport, being brave, plenty more time, asking you about your teeth problems”

“Pay less”

“Could have a symbol book for people who can’t spell”

Feedback on the NHS Warwickshire Special Care Dental Service’s Dental Health promotion

activities

Specific feedback from users of the service:

'I like the teeth group it is fun'

'[The dental health adviser] came home to help me'

'Me and my friend help each other at dinner time now'

'The dentist says I am better at cleaning my teeth’

Support worker comment, ' My customer does not have bad breath now and I think it is since he has had support cleaning his teeth.'

Finding from the Dental Practitioners Focus Group We established a focus group of 4 dentists with experience treating patients with learning disabilities to carry out a structured round table discussion, their initial views were: Training for new dentists does now include modal on learning disability which students can

follow, any further training is really down to individual interests and capacity to attend opportunities.

Health and social care plans do not currently make sufficient reference to dental provision and therefore need for support or referral to dental provision not being identified.

The self- directed support planning forms being used by Warwickshire CC currently make no mention of dental need/support

Dentists are typically happy to be able to provide treatment to people within a surgery if there is no need for adapted equipment however it is not feasible to make financially demanding adjustments and therefore they will continue to refer to specialist centres or hospitals. There are 4 specials centres across the county.

Patients that require time-consuming care are an issue for both general practice and specialist providers as the payment received from DoH is a set amount for the treatment itself and not based on the time spent. This has implications for the availability of extended appointment slots which many patients find beneficial to help them cope with treatment.

Change in referrals process to specialist centres is creating an obstacle to treatment as referrals are now only accepted from dentists or GPs, result will be less referrals as some people currently are unable to attend a general dental practice because of access or phobia issues;

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some people are not registered with a GP, some GPs are showing a resistance to make referrals - seeing it as outside of their responsibility. Until recently social workers, community & learning disability nurse and carers have been able to request a referral to the specialist centres.

Currently there is a target for under 18 weeks for a referred patient to be seen. Dentists who treat a whole family would prefer to be able to also treat the family member with

learning disabilities whenever possible, as there is the additional support then available through the family network.

Poor dental hygiene is identified as a problem for individuals with learning disabilities - possible reasons include lack of home support in maintaining good dental hygiene routine, poor diets, not seeing a dentist for a long time and medication

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CASE STUDY 1 - VIDEO DIARY

Mary (named changed) has a severe phobia of dentists and a history of getting stressed, resulting in

seizures. Mary was referred to work with the special care dental service. Initially she did some

preparation work with the Oral Health Promoter Nurse Specialist. After this the learning disability

nurse supported Mary to attend the relaxation and pre-treatment sessions at the Orchard Centre in

Rugby.

The sessions took place on a fortnightly basis, and were a very gradual move into the dental

treatment room, sitting on the chair, looking at the equipment, practicing relaxation techniques,

practicing opening mouth wide and for a count of 10. By the 3rd week Mary was ready to meet a

dentist. The dentist had a little chat with Mary but did not attempt any examination.

The sessions start with breathing exercises, and relaxation of the whole body. Next the chair was

tilted back to an angle that Mary felt happy with. The dental assistant then got Mary to practice

opening mouth wide and having the light shine onto her face. Next the assistant got Mary to keep

her mouth open to the count of ten; long enough for the dentist to count teeth on the top. Then to

repeat for time to count bottom teeth.

Mary agreed that on her next visit the dentist would come and count her teeth, while the dental

assistant recorded how many there were. Mary was happy to move to this next stage.

Unfortunately the following session was cancelled due to illness and the next available appointment

with the dentist could not take place for two months. The learning disability nurse and dental

assistant have continued to support Mary to visit the practice and have relaxation work. This was

done so that Mary would continue to feel prepared for the first examination.

Mary agreed for New Ideas to film some of her visits and is happy for New Ideas to edit these and

allow them to be used to show other people who have dental phobias.

Mary’s advice to other people is that the relaxation and pre-treatment sessions really help over

fears. She said “I’m not so worried about visiting the dentist and meeting the dentist today in her

uniform did not worry me”.

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CASE STUDY 2 - AN INDIVIDUAL’S STORY

Alan (name changed) is a 51 year old man, with moderate learning disabilities and autism. He lives

independently, with home based support to help him organise his daily life. For example shopping,

paying bills and keeping appointments. Alan has a phobia of nurses in uniform, needles and dentists.

When Alan was in his late teens, or very early twenties he attended the dentist for an extraction,

with his parents. His memory of the visit is that he panicked at the needle and tried to run out of the

treatment room. He remembers being “dragged” back to the chair, held down by the dental nurse

and his parents and receiving an injection. Since then he has found it extremely difficult to visit the

dentist.

Alan admits to having a poor diet, in particular a liking for sweet foods and fizzy drinks, and poor

dental hygiene. As a result he also has a considerable amount of tooth decay and related problems.

In recent years Alan has employed a carer who has supported him to attend a local NHS dental

practice that also operates a specialist service for people with additional needs or phobias. The

learning disability nurse has worked with his carer to address some of Alan’s fears and he has been

able to attend on a fairly regular basis (6-12months) for a check-up, clean and polish.

Towards the end of 2011, Alan developed severe toothache and was supported to attend for a

check-up. This revealed that he had an abscess requiring medication and extraction. The check-up

also highlighted other problems and the need for further extractions. The dentist advised removal of

the first tooth after a short course of anti-biotic and the rest of the treatment following the holiday

period.

Alan was encouraged to practice some relaxation techniques and was supported to attend the clinic

for his 1st extraction. His carer accompanied him into the treatment room, and was allowed to sit

close and hold his hand and reassure him throughout the treatment. Alan, reports that once the

injection had taken place, the extraction was not painful, although unpleasant and he did feel fear

and stress.

His recovery of the site has been slow; however this is probably not helped by his continual

consumption of sugary foods and fizzy drinks, despite advice offered. Alan is due to attend for the

second extraction, he is not looking forward to this and gets fretful when talking or thinking about it.

He does say that once it is over he will be ok to continue with his 6 monthly check-ups.

Alan gives credit to the work of the learning disability nurse and his paid carer in preparing him for

visits and for the relaxation techniques offered and support during visits. He does find the waiting

room experience stressful, and feels an early morning appointment helps as the later in the day the

more stressed he becomes. He does not however, seem eager to accept dietary advice.

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CASE STUDY 3 - SMILE AWARDS

Smile Award Bedfordshire

Adults with learning difficulties live in a variety of home settings; some will live with their own

families while others live in residential homes. It was agreed that the Oral Health Promotion team

(Community Dental Services CIC Bedfordshire) would use an existing successful model, implemented

with another group i.e. early years settings, to embed good practice guidelines in residential settings

for adults with learning difficulties in Bedfordshire. (The Smile Award team comprises a experienced

Senior Oral Health Promoter, a Senior Dental Nurse (Special Needs) and a Dental Nurse (Special

Needs); these are not full-time roles)

The aim of the programme is to improve oral health outcomes for adults with Special Needs;

providing robust support for sustainable change in residential and day care settings.

Children and adults with Special Needs often have poorer oral health and more untreated disease

than the rest of the population (Valuing People’s Oral Health DH 2007). Disabled people are

empowered to reach their potential with improvement in their oral health. Key recommendations

from this document underpin the Smile Award programme, namely:

Design and implement effective preventative actions and programmes.

Consistent messages across all health and social care boundaries

Build competence through training and sharing of good knowledge

Include oral health in every care plan

Changing individual behaviour is a well known health promotion approach which often requires a

great deal of personal motivation and commitment. It is recognised that this type of intervention,

alone, may have limited long term benefit (Choosing Better Oral Health DH 2005). However,

changing the environment i.e. developing strategies supporting healthier lifestyles (WHO 1986) can

have a wider more sustainable effect on a greater number of people.

The Smile Award was piloted with seven residential settings in 2009. The programme is multifaceted

and is more than a “one off” award, building on subsequent successes year on year. Last year

(2010/11), twenty two settings participated with seventeen achieving the Award certificate.

Registration is currently taking place for 2012/13.

An assessment tool comprises nine Standards which measures current practice within individual

settings; identifying areas for improvement which becomes the “targets” for settings to achieve, to

gain the annual Award certificate.

The objectives are:

Implement and maintain Smile Award (SA) Standards

Involve all staff members in implementing the programme

Develop policies to support SA principles

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Create and maintain care plans to support individual oral health needs

Attend SA training as appropriate; encouraging colleagues to attend

Share good practice and successes with participants in the Award

Activities and contact are maintained throughout the year. The programme calendar commences in

January/February with registration on to the programme and targets being agreed. Training is

delivered to staff between April and May. During the summer months snack menus are analysed and

evidence of the Standards being met, is collected during annual visits to settings. A discussion group

is organised and is well attended, during the autumn, prior to the Award Ceremony in November.

The programme supports local Joint Commissioning Strategies for adults with learning disabilities

(NHS Bedfordshire 2010-13). It does not currently receive specific funding however it does share

similar priorities and challenges as social care colleagues. Therefore it makes sense to work

collaboratively; to concentrate on prevention and early intervention, designing more personalised

care, building competency of support staff to strengthen the health and well being of service users.

Evaluation, discussion groups and evidence collection demonstrate the following measurable

outcomes:

Oral health policies are written and implemented in each setting

More confident and competent support workers

Service users have individual care plans in residential settings

Celebration policy developed in each setting

Healthier snacks, healthier choices.

Evidence that service users are involved in decision making.

It is too soon to record that oral health has improved. However, by implementing national strategies

and promoting good practice, it can be assumed that the Smile Award can only do good; that adults

with Learning Difficulties will benefit from healthier smiles and improved oral health.

Contact:

Sue Jordan

Asst Director – Public Health

Community Dental Services (CIC)

Bedfordshire

01525 636822

sue.jordan@cds-cic.nhs.uk

www.communitydentalservices.co.uk

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CASE STUDY 4 - EASE OF USE COMMUNICATIONS FOR DENTAL HOSPITAL VISIT

In recognition of the difficulties individuals with learning disabilities have comprehending and

preparing for treatment at the dental hospital, Warwickshire Special Care Dental Service have

developed a simple pack which both collects important information (eg contact details) and also

informs the individual.

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CONCLUSION - WHAT THIS MEANS

It is generally recognised that individuals with learning disabilities tend to have poorer oral hygiene

resulting in tooth decay and gum disease. Clearly nutritional diet plays an important part in this

process where soft sticky foods can be the food of personal preference and due to their desire for

‘sameness’ there is very little variation beyond this diet.

Occasionally some individuals display repetitive actions such as teeth grinding (Bruxism) of teeth

will, over a period of time, have considerable effect. Medication occasionally used for people with

learning disabilities such as anti-convulsants where epilepsy is present, SSRI’s for anxiety or

depression, or even anti-psychotics can all lead to dry mouths and therefore impact adversely upon

dental hygiene.

In addition to potentially having higher dental care needs, these individuals also often have greater

difficulty understanding both oral hygiene and dental care information, accessing services and

coping with the trauma of treatment. This can create a ‘double whammy’ of individuals with greatest

need having the least capacity for prevention or treatment.

This research project has identified good levels of service for individuals with learning disabilities in

many areas of dental care across Warwickshire. Individual’s report high levels of satisfaction with the

dignity and respect with which they are treated. However there are concerns particularly from

family carers and support workers about the capacity of the specialist dental care services with long

lead times for some appointments (eg our video diary case study client had to wait two months for a

phobia management appointment when her original appointment was cancelled due to staff

sickness) and the continuing levels of care given spending cuts across the healthcare sector.

Communication and education remain the key element in supporting the continuing dental care

needs of individuals with learning disabilities. This applies to the individuals, their carers and dental

professionals.

For the individual there is a need for:

Continuous education on oral health

Readily comprehendible information on dental visits and treatment, to both empower them

to participate as fully as possible in decisions on their treatment and also to help allay their

fears or concerns

For carers there is a need for information

to support their support of the individual (eg information they can share on oral hygiene,

information on appropriate toothpastes etc)

on good practice and how other carers in similar position approach dental care for the

individuals they support

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For dental professionals there is a need for:

Sharing good practice (eg developing readily comprehendible information, timing

appointment etc)

Understanding the issues facing individuals with learning disabilities in receiving dental care

(eg difficulty in understanding what is being said/done, level of phobia etc)

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IMPROVING THE SITUATION - RECOMENDATIONS

Following our first hand engagement with individuals with learning disabilities and their carers we

have developed a set of practical recommendations which build on the experience across

Warwickshire in addressing their needs in a consistent and efficient way. Where new activities have

been recommended we have identified indicative costs, however detailed costings have not been

developed as these would depend on the scope and take up of each recommendation. For each

recommendation we have also identified how quickly it could be implemented:

Quick Wins - could be established or delivered in a matter of weeks of being commissioned

Medium Term - could be established or delivered within 6 months of being commissioned

Long Term / Strategic - would take over 6 months to implement or develop

Based on our conclusions, our recommendations are:

In recognition of the needs of individuals with learning disabilities there is a need for:

Continuous education on oral health for individuals with learning disabilities we

recommend:

R1 - QUICK WIN Developing a programme of education events built around the expertise of

the Special Care Dental Service and New Ideas to be delivered to individuals in community

and care groups across the county. Facilitated by individuals with learning disabilities and

specialist oral health practitioners, interactive events like the Health Acts event provide an

interactive and engaging forum to reinforce messages about proper dental health, signpost

individuals and their carers to additional information and services, and allow Special Care

Dental Service staff to identify potential issues earlier to reduce the need for costly and

specialist care. The events could be tailored to the particular needs of attendees and

incorporate advice and good practice information from specialist dental care practitioners.

An indicative budget for a 2 hour workshop would be approximately £200. This could be paid

for by group clubbing together and using their personal budgets; a provider organisation

paying the costs or a centrally funded programme of 12 events spread across the county

could be £2400 depending on the scale of the events and their location. It may also be

possible to increase community engagement by develop additional training to enable

volunteers to support these events.

R2 - MEDIUM TERM Additionally this programme could be further developed to train

individuals with learning disabilities to pilot a health buddy scheme, where peer advocates

or volunteers receive training to be health buddies to go to dental appointments with

patients. A pilot project could have target of support 4 people per month to attend

appointments and include three training sessions for peer advocates/volunteers- working in

partnership with special care dental service or learning disability nurses. Staff support time

to establish and manage pilot and peer advocates expenses.

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An indicative budget for the pilot, including development of training material, could be

£2500 depending on the nature of the training material and the location of the individuals.

R3 -QUICK WIN Continue the development and promotion of the Special Care Dental Service

oral health courses which received positive feedback from individuals and carers.

Readily comprehendible information on dental visits and treatment

R4 - QUICK WIN Build on the success of existing easy to use information packs (as in Case

Study 4) to develop a series of easy read photo based guide to dental hygiene and visiting

the dentist designed and modelled by peer advocates by Hew Ideas’ Make It Easy Group in

partnership with the Special Care Dental Service. Develop a distribution network (including

online) of partner bodies, local organisations and care centres to promote and distribute this

information.

An indicative cost to produce an information pack including developing content,

photography, drafting and review for accessibility, layout and printing could be £800

depending on the size and scope of the information packs.

R5 - QUICK WIN Complete the video diary of ‘Ann’s’ treatment in managing her phobias

(Case Study 1) through to her successful treatment. Use online and partner distribution

networks to promote access to the video diary

An indicative cost for filming, editing, travel costs, production of 300 DVDs (in addition to

making the video available for uploading to websites could be £800 depending on the

quality of DVD’s used and distribution costs.

In recognition of the needs of carers there is a need for information

to support their support of the individual (eg information they can share on oral hygiene,

information on appropriate toothpastes etc)

R6 - MEDIUM TERM Development of a Carer’s Checklist - providing information for carers in

setting and attending dental appointments, including the option to provide information for

the dental practice on the special needs or concerns of the patient as a tear-off to the

checklist. Distributed through the network of partnership and community groups across the

county, including local libraries and dental practices, this could reduce the stress and time of

appointments. An indicative cost for the development of an accessible single page checklist

could be £600 depending on the quality and quantities developed and distributed.

on good practice and how other carers in similar position approach dental care for the

individuals they support

R7 - LONG TERM/STRATEGIC Development of a Warwickshire based programme for care

homes and centres to develop their knowledge and adoption of good practice, similar to the

Smile Awards developed in Bedfordshire. This programme could incorporate existing

information sources and provide a structure for care homes/centres to review their

performance and develop improvement actions.

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An indicative cost to identify the potential for this programme amongst care homes and

centres, and to establish an indicative framework for how such a programme might run,

including engaging with Bedfordshire CDS, could be £2,000 depending on the level of

engagement of both carers and health organisations in the county.

In recognition of the needs of dental professionals there is a need for:

Sharing good practice

R8 - QUICK WIN Build on the success of the initial focus group for dental practitioners to

establish one or more (depending on demand and geography) dental practioner focus groups to

share experiences and good practice (eg the benefit of providing patients with learning

disabilities with morning appointments to reduce anxiety). These groups could also hear first

hand experiences and views of individuals with learning disabilities, identify opportunities to

further develop information or services across the county and provide positive encouragement

to their peers. The success of these groups would be dependent on the quality of the

programme of discussions and the value participants found either for themselves or for the

development of care, administratively the groups could be run by a local health or learning

disabilities group.

An indicative cost would be £750 per year per group to cover any organisational costs and

transport costs for individuals with learning disabilities and/or their carers to attend, depending

on the level of activity of the groups.

Understanding the issues facing individuals with learning disabilities in receiving dental care (eg

difficulty in understanding what is being said/done, level of phobia etc)

R9 - MEDIUM TERM Building on the focus groups for dental practitioners, develop an event

open to all dental practitioners to raise awareness of the issues facing individuals with learning

disabilities. This event could follow a similar format to the interactive workshops staged by

Health Acts during this research but collecting first hand feedback from the profession on their

positive and negative experiences treating individuals with learning disabilities and their

suggestions for good practice. The results of this could then be collated and distributed through

Warwickshire LINk to all dental professionals in the county. This could also form part of

participants Continued Professional Development

An indicative cost to develop and stage a one-off event would be £1000 depending on the scale

and venue for the event and the level of contribution, if any, from participants

R10 - MEDIUM TERM Development of an advice pack / communication tool for dental practice

staff(including nursing and reception staff) dealing with the special requirements of individuals

with learning disabilities, tailored to the dental environment. This could be designed by the New

Ideas Make It Easy group and cover both generic communication tips but also specific issues

individuals have in accessing and receiving dental treatment. It could also link with making best

use of individual’s health action plans and developing a consistent quality approach to the

individual’s care.

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An indicative cost for the development of an advice pack /communication tool could be £850

depending on the quality and quantities developed and distributed.

R11 - MEDIUM TERM Additionally the advice pack / communication tool could be supported

by a workshop for dental practice staff to enable them to develop a deeper awareness of the

issues faced by individuals with learning disabilities.

An indicative cost to develop and stage each workshop would be £100 depending on the

scale and venue for the event and the level of contribution, if any, from participants

Additional recommendations

R12 - QUICK WIN Enable social workers, community & learning disability nurse and carers

make referrals to specialist dental care centres. Within both the professional and carer

communities concern was expressed at the recent decision to change the referral process to

specialist centres with referrals now only accepted from dentists or GPs; as opposed to the

previous arrangements where social workers, community & learning disability nurse and

carers have been able to request a referral. This is creating a barrier to individuals accessing

these service as some people are not registered with a GP, whilst some GPs are perceived to

resistant to making referrals - seeing it as outside of their responsibility. Similarly some

individuals are unable to attend a general dental practice because of access or phobia issues

(the particular group the specialist service looks to support). These additional obstacles are

restricting access to the specialist services needed by individuals with learning disabilities.

R13 - MEDIUM TERM In reviewing available information on the dental health of individuals

with learning disabilities we identified gaps and inconsistencies in the information collected,

for example, in self-directed support plans, health support plans, annual reviews and health

checks. We recommend that a common set of questions on dental health is developed by

the Special Care Dental Service and shared with professional staff across the county. This

could then be supported by a programme of visits or workshops with professional staff to

both improve their understanding and also improve the consistency and quality of approach

across the county.

This could be delivered within existing resources.

R14 - LONG TERM STRATEGIC Although outside the remit of the project and of Warwickshire

LINk, this research has once again highlighted the fact that treatment for individuals with

learning disabilities is typically more time-consuming than ‘standard’ treatments. As

dentist’s standard payments are based on assumptions on the time taken for treatment this

has a negative impact on the availability of dental treatment and the time available to treat

individuals. We recommend that consideration is given to adjusting fees to reflect the

additional time required for the type of positive and caring treatment identified as critical by

this research.

R15 - MEDIUM TERM Although not related to dental care, we did receive positive feedback

from carers about the engagement developed by this project and it was suggested that

similar research would be valuable in enabling the voices of individuals with learning

disabilities to be heard on other health related topics such as optical services. Depending on

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the scale of the project, the availability of specialist treatment providers and the location of

the research the cost for a similar project on, say, optical health and treatment could be

£12,000

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ACKNOWLEDGEMENTS

Health Act peer advocates: Supported by:

Liam Abraham Rob Crutchlow (Empowerment worker)

Ian Alsop Tina Oakes (Citizen Advocate)

Janice Alsop

Kerri Bosworth

Martin Chimes

Suzi Miller

Chris Taylor

David Taylor

Stella Taylor

All the residents and staff at People In Action

All the customers and staff at Shortwoods Day Centre- Dordon

All the residents and staff at Home Farm Trust- Bidford

Karen Green

Staff at Orchard Centre, Rugby.

Warwickshire Learning Disability Partnership Board

Warwickshire Good Health Sub-group

Sue Jordan- Bedfordshire Community Dental Services

Dental practitioners focus group