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Good oral health is an important factor in people’s general health and quality of life. The evidence shows that people with learning disabilities have poorer oral health and more problems in accessing dental services than people in the general population. People with learning disabilities may need additional help with their oral care and support to get good dental treatment because of cognitive, physical and behavioural factors.
There is a legal obligation for dental services to make reasonable adjustments to ensure that their patients with learning disabilities can use their service in the same way as other people. This might include making practical adjustments to the environment or changes in the process. This guidance signposts resources that can be used to support people with learning disabilities with their oral care. There are strategies that can be used to help reduce anxiety and better prepare people for dental treatment, such as desensitisation. There is a need for training and education for people with learning disabilities, their family carers and supporters and dental professionals and this report gives examples of how this can be done.
Even with reasonable adjustments in place there may be a need for some people to have a general anaesthetic in order to have a dental examination or treatment. If this is necessary there should be consideration of other, non-dental, interventions that can be done at the same time.
This guide contains information about oral care and dental treatment for people with learning disabilities. It is intended to be of use to family carers and paid supporters that help someone with their daily oral care and in accessing dental services. It also aims to help staff in dental teams to provide services that are accessible to people with learning disabilities. There is information about how learning disability staff can support this.
Under the Equality Act 2010[footnote 1], public sector organisations have to make changes in their approach or provisions to ensure that services are accessible to disabled people as well as everybody else. This guide (an update from one on the same topic published in 2012) is one in a series of guidance looking at reasonable adjustments in a specific service area. The aim is to share information, ideas and good practice in relation to the provision of reasonable adjustments.
We searched for policy, guidelines, research and resources that relate to people with learning disabilities and oral care and dental services. We put a request out through a range of networks for people interested in services and care for people with learning disabilities and dental networks. We asked people to send us information about what they had done to improve oral care and support dental treatment in people with learning disabilities.
This guidance sets out what we found in our research and includes case studies and example of reasonable adjustments. It also describes the online resources we found and where you can access them.
We would like to thank everyone who shared expertise, resources and contributed examples from practice to this guidance. For reasons of anonymity we have changed some details, such as gender and age of the individuals in case-study examples.
3. What we mean by learning disabilities
A person with learning disabilities has:
- a significantly reduced ability to understand new or complex information and to learn new skills
- a reduced ability to cope independently
These will have started before adulthood, with a lasting effect on development.
This doesn’t include people with conditions such as dyslexia, in which they have a difficulty with one type of skill but not a wider intellectual impairment.
Public Health England (PHE) estimates that there were 1,087,100 people with learning disabilities, including 930,400 adults, in England in 2015. The number of people with learning disabilities recorded in health and welfare systems is much lower. For example, in the same year, GPs identified 252,446 children and adults as having learning disabilities on their practice-based registers[footnote 2]. Those on the registers are likely to be the people who have more severe learning disabilities or more obvious conditions causing it (for example Down’s syndrome).
4. What you might notice if someone has learning disabilities
Like the rest of the population, people with learning disabilities come in many shapes and sizes. Some look a little different (for example, a member of a healthcare team might notice a person with Down’s syndrome) but lots do not. It is fairly obvious if people have more severe learning disabilities, and GPs, family carers or support staff may say they have this problem when making a dental appointment. But dental teams need to be alert to the larger number of people who have mild to moderate learning disabilities whose GP may not have recorded this, but who still need, and are entitled to, support both in their treatment and understanding their personal dental care requirements, and in managing the administrative aspects of claiming exemption from payment for treatment.
You might notice someone who has difficulty with:
- reading or writing and forms
- explaining symptoms or a sequence of events
- understanding new information or taking information in quickly
- remembering basic information such as date of birth, address, health problems
- managing money
- understanding and telling time
If you notice someone with these difficulties, you should speak to them to ask more questions about their communication or support needs and check if they understand and remember information.
5. What we mean by reasonable adjustments
Under the Equality Act 2010[footnote 1] public sector organisations must make reasonable changes in their approach or provision to ensure that services are accessible to disabled people as well as everybody else. Reasonable adjustments can mean alterations to buildings by providing lifts, wide doors, ramps and tactile signage, but may also mean changes to policies, procedures and staff training to ensure that services work equally well for people with learning disabilities. For example, people with learning disabilities may require clear, simple and possibly repeated explanations of what is happening, and of treatments to be followed, help with appointments and help with managing issues of consent in line with the Mental Capacity Act. Public sector organisations should not simply wait and respond to difficulties as they emerge: the duty on them is ‘anticipatory’, meaning they have to think out what is likely to be needed in advance.
All organisations that provide NHS or adult social care must follow the accessible information standard by law. The standard aims to make sure that people who have a disability, impairment or sensory loss are provided with information that they can easily read or understand with support, so they can communicate effectively with health and social care services.
6. The structure of dental services
In England NHS dental services fall in to 3 main categories.
6.1 General Dental Services (GDS)
These services are directly accessed by the public such as high-street dental services. These are commissioned via NHS England and each practice is an independent business with a contract with the NHS to deliver a set amount of work, or units of dental activity (UDA). Increasingly GDS are being delivered by multi-surgery groups and corporate firms and many offer private treatment options alongside NHS services. NHS dental services are charged in 3 bands of payment:
- Band 1 – this includes examination, diagnostics, such as X-rays and prevention
- Band 2 – this includes fillings and dental extractions
- Band 3 – this is for additional treatments such as crowns, bridges and dentures
Some groups are exempt from paying for dental treatment (see section below). Knowing the correct exemption information is very important. The NHS Business Services Authority carries out checks on patient claims; if it cannot confirm that a patient was entitled to claim free NHS dental treatment then the patient will receive a Penalty Charge Notice of £100. Patients may also be charged a fine of £100 on top of the NHS fee if they fill in the form incorrectly.
6.2 Community Dental Services (CDS)
Sometimes known as salaried services, these provide care to patients, who may have difficulty accessing high street dental services due to their social, medical or dental need. This may include people with learning disabilities, complex medical needs, physical disabilities or challenging behaviour. Often an initial referral from a medical or dental professional is required to access the community dental service and the admission criteria and services offered vary locally. NHS dental patient charges apply to these services too.
6.3 Hospital Dental Services (HDS)
These include specialist dental services such as complex orthodontics (braces), oral surgery (such as difficult extractions) and maxillofacial surgery (such as cleft palate surgery). To access these services requires a referral from a medical or dental professional. These services are commissioned by NHS England.
7. Who is entitled to free NHS dental treatment in England?
Certain groups are exempt from paying these fees including those under 18 years of age or 19 if in full-time education, pregnant and nursing mothers, people receiving income support, income-related employment support allowance or income-based Jobseeker’s Allowance and Universal Credit in certain circumstances. People on a low income with a valid HC2 certificate are also entitled to free dental treatment. There is more detailed information from the NHS about dental charges.
8. National policy
The Clinical Guidelines and Integrated Care Pathways for the Oral Health Care of People with Learning Disabilities is evidence-based guidance on the prevention of oral diseases and the maintenance of good oral health. The guidance and recommendations are for all age groups. This document is due to be reviewed and updated.
The 2015 NHSE Commissioning Guides offers a standardised framework for the local commissioning of dental services. The guides for special care and paediatric dentistry are relevant to the oral healthcare of people with learning disabilities. The guides outline how primary dental care and hospital dental services can be organised to allow all providers to work together to focus on patients and their needs.
9. Oral health of people with learning disabilities
Support for good oral and dental care is an essential part of promoting good health and quality of life for people with learning disabilities[footnote 3]. However, national and international research, including systematic reviews, consistently shows that people with learning disabilities have[footnote 4] [footnote 5] [footnote 6] [footnote 7]:
- higher levels of gum (periodontal) disease
- greater gingival inflammation
- higher numbers of missing teeth
- increased rates of toothlessness (edentulism)
- higher plaque levels
- greater unmet oral health needs
- poorer access to dental services and less preventative dentistry
There is mixed evidence around levels of tooth decay, with some studies reporting higher rates[footnote 5] [footnote 8], and others showing similar or even lower rates than the general population[footnote 9]. However, the evidence consistently shows higher levels of untreated tooth decay[footnote 4] [footnote 5] [footnote 6] [footnote 7]. The treatment of tooth decay in people with learning disabilities is more likely to lead to extraction rather than restoration[footnote 9]. There are larger rates of missing teeth and toothlessness in people with learning disabilities, and these rates increase with age[footnote 4] [footnote 10]. A study in Ireland found a third of people with learning disabilities aged over 50 had no teeth and the majority of this group did not have dentures[footnote 9]. This highlights the need for good proactive oral care throughout life as this should be largely avoidable[footnote 9].
People with learning disabilities may often be unaware of dental problems and may be reliant on their carers/paid supporters for oral care and initiating dental visits[footnote 5]. People with Down’s syndrome are particularly susceptible to poor oral health as well as people who are unable to co-operate with routine dental care[footnote 7].
9.1 Impact of oral health problems
There are physical, psychological and social consequences of poor oral health, and it can have a major impact on people’s quality of life. Poor oral health can lead to pain and discomfort, which may be hard to communicate for some people with learning disabilities. Poor oral health is “significantly associated with major chronic diseases such as cardiovascular disease, diabetes, respiratory disease and stroke”[footnote 4]. Oral health problems can impact negatively on self-esteem, enjoyment of food, communication and ability to socialise[footnote 4] [footnote 8] [footnote 11]. People with learning disabilities aware of their dental problems have reported not wanting to smile[footnote 5].
More specifically, toothlessness is likely to result in poor chewing ability and restricted food choices, which can increase the risk of nutritional deficiencies and obesity[footnote 12]. It can reduce the pleasure of eating and increases the risk of health conditions, including cardiovascular disease[footnote 9].
9.2 Risk factors for poor oral health
Many people with learning disabilities are reliant on others to help them clean their teeth. Supporters are often inadequately trained for this and may not see oral care as a priority[footnote 13]. One study found that only 2% of people with learning disabilities used floss or interdental cleaners, which is a worryingly low proportion[footnote 14]. In addition to the challenges they may face with getting good oral care, research suggests that between 40% and 60% of people with learning disabilities will struggle to cope with dental treatment when it is needed[footnote 15].
- frequent sugar intake
- prescription of medications that can reduce saliva flow or increase gingival inflammation
- gastroesophageal reflux
- lower income and educational levels
- difficulty in accessing dental services
- being non-oral feeders
- reduced dexterity resulting in ineffective tooth brushing
- sensory sensitivity, making it difficult to co-operate with oral care
- difficulty in understanding the importance of daily oral care
The evidence of high rates of poor oral health combined with the difficulties in accessing services suggests there is a need for reasonable adjustments to be put in place to ensure equitable outcomes from dental services for people with learning disabilities.
10. Barriers to good oral care and accessing dental services for people with learning disabilities
There are multiple barriers to both good oral care and accessing dental services for people with learning disabilities. Some of these relate to individual characteristics of either the patients or professionals and some are service related. There are interactions between these. For example, a long wait in a busy waiting room may increase an individual’s anxiety about the appointment[footnote 16].
10.1 Individual characteristics
There may be cognitive, physical and behavioural difficulties that impact on someone’s ability to undertake daily oral care and cope with dental visits[footnote 6] [footnote 11] [footnote 17]. These include:
- not understanding the importance of tooth brushing or forgetting to do this
- limited mobility making it difficult to brush teeth physically
- sensory problems that mean someone doesn’t like being touched
- behaviour that makes it hard for someone to support oral care
- limited communication – problems in communication between the patient and dentist are a major barrier to successful dental treatment
(NB: A focus group involving people with learning disabilities considered training for dental professionals in communication with people with learning disabilities as their highest priority[footnote 18]. It is important to note that dental professionals may need to communicate with people who use spoken language but who may struggle with complex words for example, as well as people who are non-verbal.)
As a result of such problems, many people with learning disabilities are dependent upon family carers or paid supporters for support with oral care. This may be prompting, some assistance with teeth cleaning, or they may be fully dependent. This reliance on others can be a barrier to good oral care because of:
- limited awareness of dental services available, such as community dental services[footnote 5] [footnote 8]
- lack of care-giver training around provision of oral care[footnote 4] [footnote 19]
- understaffing and lack of time[footnote 4]
- oral health not considered a priority[footnote 4] [footnote 13]
- difficulty in brushing thoroughly due to limited co-operation[footnote 13]
- concern that brushing is painful for the person[footnote 11]
- staff finding tooth brushing an unpleasant task[footnote 13]
Research has shown that anxiety is a major factor influencing access to dental services for people with learning disabilities[footnote 5]. This is likely to be worse for females, people with a higher severity of learning disability and younger people[footnote 4]. Previous negative experiences have been shown to have a lasting impact on someone’s fear of dental appointments, and therefore it is important to try to get it right and use reasonable adjustments to alleviate anxiety[footnote 16].
Factors affecting someone’s ability to access dental services include:
- not having a regular dentist[footnote 5]
- difficulties in getting an NHS dentist[footnote 20]
- cost of dental treatment[footnote 21]
- finding a general dentist practice willing to provide treatment and make the necessary reasonable adjustments – additional appointment time may be needed, but this is not compensated for in the current fee system[footnote 5]
- complex referral systems and long delays in specialist services for people with more complex needs[footnote 16] [footnote 20]
- problems with accessing services if general anaesthesia is needed[footnote 8] [footnote 21]
- reliance on carers to make and support with appointments[footnote 20]
- difficulties with transport[footnote 20]
- lack of accessibility of dental surgeries for people in wheelchairs – one survey of dental practices showed that although 77% said they were accessible for wheelchair users, only 7% also had suitable parking and toilet facilities[footnote 16]
10.3 Pain recognition and response
Some people with learning disabilities find it difficult to communicate that they are in pain or to describe the source of the pain. Untreated pain is often manifested in behaviour that may be described as challenging. Diagnostic overshadowing is when symptoms of poor health are overlooked and attributed to someone’s disability, rather than investigated and treated.
It can be hard for supporters to recognise that someone is in pain, particularly if the person is non-verbal[footnote 5]. There are tools that can help with pain recognition. There should always be a consideration of pain as a cause of challenging behaviour (such as headbanging) as demonstrated in this case study:
Paul is a young man with a severe learning disability, severe epilepsy and no verbal communication. Paul had a history of challenging behaviour. This was demonstrated by Paul thumping himself in the head and slapping himself on the face. This behaviour settled over the years and would only occur if Paul was unwell or very anxious. Paul was supported by the psychiatrist who introduced medication to reduce the behaviour and to keep Paul safe.
Paul’s carers requested that Paul be seen by the psychiatrist in response to this increase in his challenging behaviour. Paul’s community nurse felt that it was in Paul’s best interest to rule out any underlying physical health issue. Paul’s distress prevented the GP from taking any blood samples safely. There was an urgent referral to the specialist dentist, and it was agreed that it was in Paul’s best interest to be examined under intravenous sedation.
Once sedated, Paul was given a thorough examination; it became evident that Paul had a large abscess on one of his teeth. The dentist explained that this would have been extremely painful for Paul for several weeks. The abscess was drained and the tooth was treated. Following this intervention Paul’s behaviour has settled and no longer challenging, so the appointment with the psychiatrist was cancelled.
10.4 Attitudes, skills and knowledge of dental staff
It can be challenging to provide dental treatment to people who struggle to understand what is being done and may be uncooperative. Many dentists are unconfident about interacting with people with learning disabilities[footnote 20] and some are unwilling to treat them[footnote 5]. Dental practitioners have cited lack of knowledge and expertise in this area as reasons for this[footnote 17].
Evidence suggests that poor attitudes of dental staff can be a barrier to people with learning disabilities using dental services[footnote 5] [footnote 7] [footnote 8]. Carers and patients have emphasised the need for people with learning disabilities to be treated with respect and their rights acknowledged[footnote 8] [footnote 16].
Transition between children and adult health services can be a difficult process for people with learning disabilities, and they may be more vulnerable at this time[footnote 22]. Local surveys and interviews with people with learning disabilities have highlighted this as being problematic[footnote 16] [footnote 20]. Local needs assessment work in Sheffield recommended that access to dental services needs to be maintained during the transition from child to adulthood[footnote 20].
11. What we know about what works at an individual level
The literature on barriers has identified some that relate to personal characteristics. Such factors can be mitigated by good support and reasonable adjustments. This next section looks as what we know can help improve oral care and access to dental services for people with learning disabilities and gives examples of how this is done.
11.1 Reducing anxiety
Having choice and control in a situation can help reduce anxiety about it. It is important to view people with learning disabilities as active participants in their own dental care, rather than simply as recipients of services[footnote 16]. When asked about what is important to them about dental services, people with learning disabilities have said that they need the right to choose which dental services they use[footnote 18]. Research suggests that this is a group of people who do not know how to complain if they want to and do not feel they have the right to choose alternative services. The authors argue that shared decision-making and involving them in planning services can help to address this imbalance and thus improve their interactions with dental services[footnote 18].
For people to feel empowered in their use of services they need good information about the treatment they will be getting. A focus group with people with learning disabilities showed that good information about dental services was their biggest concern[footnote 18]. It is crucial that dental staff do not underestimate the information needs of individuals, even if they have limited communication skills[footnote 20]. There needs to be sufficient time to explain what is happening during a consultation using easy language and time for the individual to process this[footnote 16] [footnote 20]. Therefore, providing longer appointments is a common and important reasonable adjustment.
We have identified free easy-read and accessible resources that can be used to help people understand about good oral care and dental services, and these are described in Table 3
Information given prior to a dental visit can help someone to be prepared for the appointment. A special care dentist has described how useful she finds a wordless book called ‘Going to the Dentist’. This is part of a series of books that have been created to support people who find pictures easier to understand than words:
The story shown in the book is that Matthew eats lots of sugary foods and doesn’t take very good care of his teeth. When Matthew gets toothache, he goes to see the dentist. At the appointment, he consents to having a check-up and treatment to get rid of his toothache. When he feels better, Matthew goes back to the dentist to learn how to keep his teeth and gums healthy.
The story gives examples of a dental X-ray, an injection, drilling and filling and good oral hygiene routines.
This book may be useful to both professionals and family carers/paid supporters when preparing someone for a visit to the dentist or supporting a patient during an appointment.
I would certainly use this resource myself when working clinically, and I know that it has been used in special care clinics to ease anxiety for patients attending for the first time and for patients undergoing dental treatment. Additionally, it is a valuable resource for both parents and guardians pre and post appointments.
Dr Amber Qureshi, Specialist in Special Care Dentistry
Individuals with a particular fear of dental examination/treatment may require some support around desensitisation. This is usually a systematic programme supporting the individual to relax and gradually introducing them to the feared stimulus. There has been little research in this area, but a case-study report demonstrated that a simple cognitive behavioural intervention can be effective in reducing dental anxiety[footnote 23]. In this case the individual had not had a dental check-up for over 15 years, when he had needed treatment under a general anaesthetic. After some structured cognitive behavioural sessions, he achieved his goal of having a scale and polish treatment at the dental surgery and continued to attend for check-ups. This provides evidence that cognitive behavioural approaches can be a useful approach for people with learning disabilities if adapted appropriately. Other research has highlighted the need to have a dental anxiety scale validated for use with people with learning disabilities[footnote 4]. This could be used to flag people who may need extra support and to assess the value of any adjustments and interventions.
There are changes that can be made to the environment that can help reduce people’s anxiety levels. The waiting room can be a stressful environment, particularly for those already anxious about the appointment. It is important to keep people informed about any delays while they are waiting[footnote 16]. Factors that can help improve the waiting room experience for people with learning disabilities include drinks machines, television and books and magazines that have a lot of pictures[footnote 5].
It may be desirable to explore approaches that mean that people who find the waiting room a stressful environment can avoid it entirely.
The Special Care Dental Service at Sussex Community NHS Foundation Trust (SCFT) undertook a pilot study with their patients with autistic spectrum conditions where they helped people to avoid the waiting room. The idea for this came from feedback from families and observation of what worked for people. They evaluated the use of a text messaging service allowing patients to wait outside the dental clinic in their preferred ‘safe area’ (usually their car) until alerted by text that the clinician was ready, and the patient could then walk straight through to the dental surgery.
This was found to be useful for Tom who is a young man with autism, severe learning disabilities, speech and language impairment, ADHD, epilepsy and several challenging behaviours. Waiting and use of the waiting room is stressful for Tom and consequently his family and carers. Through adolescence to early adulthood Tom developed increasingly challenging behaviours, including activating fire alarms, behavioural vomiting and faecal smearing. Tom routinely attends the dental service at SCFT with 2 carers and his mother. Tom remains in the car with his carers whilst his mother attends the dental reception to update any required paperwork. The dental team are aware that Tom’s anxiety can escalate and his behaviour deteriorate even if kept waiting in his ‘safe area’.
Therefore, where possible, he is scheduled at the beginning of a session. Once the paperwork is completed, the dental team are fully prepared so that Tom can leave the car and move swiftly in to the dental surgery. Care is taken to ensure Tom cannot touch the fire alarm buttons as he makes his way to the surgery. When he arrives in the surgery, he chooses the music on the radio and turns the volume up, then sits down and accepts treatment very well with the help of his mum counting backwards until it is finished. It is equally important Tom exits with the same slickness, so as soon as treatment is completed, he is taken back to the car. His mother returns to the surgery to conclude the appointment with a discussion of findings and advice. Recently the carer filmed Tom’s appointment so that Tom could enjoy watching it back. This helps Tom relate his trip to the dentist with positive experiences and a sense of exerting some control, for example, by choosing the music.
This system has enabled Tom to attend for regular dental check-ups and scaling to maintain satisfactory oral health without need for invasive treatment or general anaesthesia. Close collaboration with his mother in planning the appointments and her involvement and motivation in looking after Tom’s dental health has been key to the success.
For further information, please contact Jennifer Parry or Parul Patel, SC-TR.SCDHQ@nhs.net
11.2 Building a good relationship
Continuity and consistency are important for many people with learning disabilities as this can help them to build a good relationship with their dentist. Factors that can help someone to have trust in their dentist include[footnote 5]:
- attitude towards the patient – in particular the need to treat the person with respect and to be patient
- skills in terms of communication
- knowledge of any specific dental issues faced by people with learning disabilities
- understanding specific needs people with learning disabilities may have in order to help them co-operate with investigations or treatment[footnote 16]
These stories shared by a family carer illustrate the importance of the attitude of the dental professional and the need to build trust:
I take my grandson to see the dentist. Samuel has Rubinstein Taybi Syndrome (RTS), a rare genetic condition which can affect teeth. Samuel has learning disabilities and displays some autistic behaviours.
Samuel is very anxious when I take him to see the dentist. He refuses to go into the surgery treatment room and would have a meltdown if not handled carefully. The dentist is really great with him and comes out into the waiting room to look at his teeth there. He is very kind and gentle with Samuel, and we are hoping to gradually get him into the surgery so that if he needs any other treatments in the future, they can be done. We really appreciate the time and trouble the dentist takes with Samuel.
Our son has severe autism, profound learning disabilities, challenging behaviours, is highly sensory and is non-verbal. When Jonathon had severe pain from a hole in his tooth, we took him to our excellent local dentist, but he just ran around the surgery. We eventually heard of the Community Dental Service (not advertised), and he had an operation under general anaesthetic the next day. He had 8 teeth removed and 6 fillings. He continues to visit the Community Dental Service. These visits for the past 3 years have been about acclimatisation and trust building. He now will lie on the dental couch and let the dentist look in his mouth. If he needed invasive treatment, it would have to be under general anaesthetic. We have since moved, but it has been agreed that he continues to go to the Community Dental Service which is familiar to him.
We have also been sent an example where staff at a dental practice provided wider support to one of their patients:
In Lancashire Care NHS Foundation Dental Service, a senior dental officer worked with a man who had mild to moderate learning disabilities. In the past he had needed a general anaesthetic for dental extractions but more recently he had managed some treatment under local anaesthetic. He was very anxious about treatment by a new person, and he was not receptive to advice about oral health, feeling he was being nagged. He lived with his mother and brother who both had health issues. During a routine dental check-up, he expressed a wish to become more independent as he was concerned that his home environment was limiting his personal growth. He asked for help to find local services that could help him to gain essential life skills, as he felt his family could not provide this support.
The dentist, nurse and receptionist used available time from a failed appointment later in the day to investigate current services run by the local council to support adult learning. This information pack was then passed to the patient at a follow-up appointment. It consisted of simplified contact details and a map to central access sites at the local library and town hall.
For further information, please contact Hilary Teale: Hilary.Teale@lancashirecare.nhs.uk
Education and training may improve attitudes and there is a need to be able to measure this. One study developed a test to evaluate values, attitudes and intentions of dental students in relation to people with disability[footnote 24]. The selected battery showed good results but needs to be more widely validated and could then be used as a tool to evaluate the impact of specific teaching programmes[footnote 24].
An earlier study found an educational intervention did not appear to have any significant positive impact on dental students’ attitudes to people with disabilities[footnote 25]. The authors identified the need for changes to teaching approaches and for broader outcome measures that could capture improvements.
Following our information request we received feedback from a registered manager of a provider organisation who identified what their community dentist does that helps to make it a positive experience for the people they support:
- greets the service user as well as the staff and talks to the person
- listens to what the staff are telling her
- gives all the advice on how staff can best support the service user with dental support
- asks the staff questions and shares information
- gives lots of reassurance to staff and service users
- takes her time and doesn’t ever rush
- builds up a relationship with each individual
- never forces anything – if there is something she cannot do then she will make an appropriate referral
- always praises the staff
It is important that reasonable adjustments being put in place consider the needs of the individual. For example, the provision of easy-read information is a common reasonable adjustment, but this may not be helpful to someone who is unable to read at all. Research advocates a personalised approach to oral health management[footnote 11].
A family carer describes the things that can be done to help her daughter have her teeth examined:
In the past we have had numerous problems with dental care for my daughter. Now, Anna attends a specialist community-based dental service where the staff try to help in any way to be able to examine her teeth. She can stay in her wheelchair with the use of a tipping plate that allows it to tilt backwards. It is important she remains in her wheelchair. She feels safe there, she is more likely to allow the exam which makes the appointment quicker, and it is the easiest way for them to get a good view of her teeth. We are able to help and cuddle her, give her toys to play with and hold her hands. All of these things help relax her, help her feel safe and also distract her. This means that Anna is calmer and more co-operative.
If she needs further dental work, then this is quickly arranged at the hospital where we work together with the learning disability liaison nurse to ensure it runs as smoothly as possible. A plan for her needs is written and followed.
We have been sent numerous examples of reasonable adjustments that people have found helpful in relation to dental care. It may be useful to consider how such adjustments would benefit an individual. Some of the examples that have been found to be useful are:
- use of a flag on electronic record cards so that all staff are aware that a person has learning disabilities
- giving someone a first appointment in the day
- longer appointments
- use of easy-read resources and videos to help someone prepare for their visit and what to expect during it
- use of social stories to help prepare for a visit
- picture action cards to use as a non-verbal aid to communication – these can be laminated so they can be wiped clean
- desensitisation work
- organised visits in advance of treatment to dental surgery, ward or theatre, etc. with the opportunity to take photos to revisit at home
- meeting dental clinical staff who will be present on the day of operation
- use of sedation
- gaseous induction to avoid needles – this may include giving someone a mask to take home to help them get used to it
- use of a mobile phone or tablet to provide distraction
- singing, dancing, colouring or offering reassurance can help the individual cope with the stress of the procedure
- use of sensory aids, such as a light machine that shines on the ceiling for distraction
- when someone needs dentures, it can be useful to give them denture trays to take home and practice filling with gum to make an impression
12. What we know about what works at a service level
Reasonable adjustments can be put in place to meet individual need, but they may also relate to changes to policies, procedures and staff training to ensure services work equally well for people with learning disabilities.
12.1 Training and education
The evidence shows clearly a need for better training and education to improve oral care and dental services for people with learning disabilities. This is important for family carers, paid supporters or dental professionals and their staff teams as well as for people with learning disabilities themselves.
Problems with the support from care staff have been identified as a barrier, but, if they are able to provide good support, their input should be something that helps to facilitate good oral health. Often care staff are expected to assist with oral care for the people they support despite having had limited or no training. Supporting oral care can be challenging, particularly with people who have difficulty tolerating tooth brushing. Most carers in research studies have reported they would welcome training around this[footnote 5]. Such training should cover topics such as[footnote 11] [footnote 14]:
- how to give verbal instructions and prompt
- how to provide direct assistance
- use of strategies such as distraction, encouragement and reassurance
- establishing an oral care routine in a specific place
- advice on the best equipment to use, such as modified or electric toothbrushes, type of toothpaste etc.
- recognition of dental problems
- how to access specialist support
A train-the-trainer education programme was used to deliver a training intervention to staff in residential care settings. Dental care professionals trained one person in each setting who was then responsible for cascading the learning to colleagues. Comparisons with a control group showed that over 8 months later the training programme had improved knowledge, attitude, self-efficacy and reported behaviour amongst care staff[footnote 13]. A follow-up looked at whether these benefits led to improved oral health for the people they supported, in terms of plaque and gingivitis. There was a positive trend but no significant improvements[footnote 26]. Therefore, further research is needed into how such education programmes can be translated into improved outcomes.
For dental professionals
The need for better learning disability training for dental care staff has been identified by dental professionals, carers and people with learning disabilities[footnote 5] [footnote 18]. This should extend to the wider staff team such as receptionists[footnote 16]. Training should include[footnote 4] [footnote 5] [footnote 15] [footnote 16] [footnote 18]:
- key information about the particular oral health needs people with learning disabilities might have
- effective ways of providing oral care in dental settings
- disability awareness and the need to make reasonable adjustments
- communication with people with learning disabilities
- the use of safe sedation
Ideally people with learning disabilities should be involved in delivery of the training as one of the valuable aspects of this is the opportunity for dental staff to gain experience of interacting with people with learning disabilities.
An example of training for dental professionals comes from Derbyshire Healthcare NHS Foundation Trust where feedback from people with learning disabilities and their supporters has identified the need to improve access to mainstream dental services. The Strategic Health Facilitation team worked with the clinical dental director to address this and decided to run awareness sessions for GDPs. The Strategic Health Facilitator for adults with learning disabilities worked with the senior salaried dentist and outreach teaching lead to plan this training.
The overall aim was for GDPs to understand the barriers in accessing dental services for people with learning disabilities and to learn more about how to meet their needs. More specifically, the topics covered were:
- understanding what a learning disability is
- what dental issues people with learning disabilities are more likely to have
- reasonable adjustments to make accessing dental services easier and a more positive experience
- capacity and consent
- the Accessible Information Standard and communication
- examples of good practice from the Community Learning Disability Team and people with learning disabilities were shared
The strategic health facilitator co-delivered the training with an assistant who is employed as part of the team and has learning disabilities.
Despite continuing professional development (CPD) points being attached to the training, there was low uptake and only 1 of the 2 planned events went ahead. All those who had booked a place attended on the day, and their evaluation feedback was positive.
Given the low uptake of the training, the team are looking at how they can better provide learning disability awareness to GDPs in future. Possibilities include:
- having a display or information stand, with practical information, top tips, communication tools etc. at other training events
- sharing a flyer with details of the strategic health facilitation team, offering to do free bespoke training sessions at the individual dentist practices
For further information please contact Lynn Morris: Lynnmorris1@nhs.net
For people with learning disabilities
There is a need for accessible information about the importance of good oral health and this should be supported by training[footnote 16]. Such approaches need to take account of the range of abilities of the people being trained and design suitable education sessions. In residential settings such input should be delivered alongside training for support staff[footnote 19].
An example of education for people with learning disabilities:
A support worker for Kent County Council told us: ‘The learning disabilities nursing team in Kent County Council delivered an hour-long session to adults with learning disabilities at our local day service. This was called: Don’t Forget Your Toothbrush. The aim was to promote good oral hygiene and the importance of regularly cleaning teeth and dental check-ups. The session was delivered in such a way that most of the people could understand what was being said to them, and it was interactive and fun. The PowerPoint presentation was pitched appropriately and the handouts useful and informative. The use of a large set of teeth that needed cleaning proved to be a big hit with the service users. There was a follow-up session 6 weeks later to underpin what had been discussed’.
The learning disability nursing team are part of an integrated team with Kent Community Health Foundation Trust and Kent County Council working as an alliance with Kent and Medway Partnership Trust also.
The nursing team found that the use of interactive, ‘hands on’ physical objects was helpful and they developed workbooks and resources to be used. This training session can also identify people who have a deeper-seated anxiety about using dental services. Further input can then be offered to the individual and a referral can be made to the nursing team for desensitisation work. The nursing team will work with the individual in a person-centred way, adapting the approach to suit the individual, with the aim being that after the desensitisation work they can successfully have teeth checked and access their dentist.
For further information, please contact the community learning disability nurses on 0300410333 or Lisa Harrington: firstname.lastname@example.org
For people with learning disabilities to provide peer support
Peer-led education and training is well-established in many areas, but there is little evidence of the benefits of it in relation to oral care for people with learning disabilities.
However, early evaluation of a peer-led dental-ambassador training programme, run by Plymouth-based charity Well Connected, showed high levels of engagement from participants and improved knowledge and self-care[footnote 27].
Well Connected delivers the oral-health education and training package to people with learning disabilities to enable them to become dental ambassadors and share key oral health messages with others. This might be in education and residential settings, workplaces, advocacy groups as well as with friends and family.
The training is delivered by 2 members of the Well Connected team, an oral health educator and a community engagement specialist, usually over 5-6 weeks. The topics covered are:
- why teeth are important
- better brushing
- diet and making simple swaps
- impact of sugar and oral health
Alongside this, they are also given wider training in presenting skills, demonstration skills, working as a team and giving feedback.
An update on how this programme has shown that it has achieved much more than was originally anticipated. The dental ambassadors have given examples of changes they have made, such as stopping drinking cola or feeling confident about brushing their teeth independently. However, there have been wider benefits for them as well, such as improved confidence, clearer Makaton signing and better management of diabetes. Watch some of the dental ambassadors talking about the benefits of the programme:
In addition to finding out how to improve their own oral health, the dental ambassadors learn how they can pass on messages about good oral health in a way that is meaningful to other people. This peer-to-peer approach can be very effective and has led to new opportunities for the ambassadors to take part in events and activities.
Some of the key factors that make the training a positive experience for the dental ambassadors are:
- keeping the sessions fun, lively and interactive
- use of games, props and activities
- visiting the groups prior to the training to find out about their particular learning needs and the approach they would benefit from
- training being delivered in an environment they are familiar with
- taking a person-centred approach – participants create their own portfolio, reflecting their personal likes and dislikes
This programme started when students at the Peninsula Dental School worked with Plymouth People First (PPF) as part of a student project. This was very successful, with the PPF dental ambassadors delivering training to local peer groups as well as professionals. A second cohort of PPF dental ambassadors was trained to increase their level of engagement, but due to a lack of funding PPF were unable to continue with the programme.
Well Connected have continued to develop and enhance the programme, investing in resources, teaching aids and materials. The programme has been successfully delivered to a group of adults in Cornwall, the Cornwall CHAMPs, who work with the health promotion team. This group of ambassadors were so enthusiastic, they have written, performed and recorded a dental rap which they use when they present to other groups:
Most recently the programme has been delivered to young people at Dartington Lifeworks College who have enjoyed using games and activities to increase their oral health knowledge. They have created a wall display in the reception area of the college and have also made simple swaps to reduce the amount of sugar in drinks and snacks.
For further information about the project, including delivery costs, please contact Wendy Smith: email@example.com
12.2 Collaborative working
Partnership working between mainstream health services and specialist learning disability teams can improve access to healthcare for people with learning disabilities. Recent research recommended the need for collaborative planning between the oral health system and learning disability services[footnote 11].
An example of a collaborative initiative in an acute setting:
Mouth Care Matters (MCM) is a Health Education England initiative which aims to improve oral health for people in hospital. In Darent Valley Hospital (Dartford and Gravesham NHS Trust) they undertook a project specifically for adult patients with learning disabilities, which incorporated the MCM principles.
The learning disability liaison nurse (LDLN) and the MCM lead nurse worked collaboratively on this project and when a patient was identified as someone with learning disabilities they undertook a joint assessment. This included finding out if the person had a dentist, had visited their dentist in the past year and a mouth care review. Input provided by the MCM lead nurse following assessment included:
- providing oral care to patients
- making recommendations for mouth care and documenting these in the person’s notes
- training staff in how to complete mouth care assessments and support mouth care needs
- giving oral health advice to patient, family carers and paid supporters
- referring to Community Dental Service for ongoing support following discharge
The MCM lead nurse found family carers, paid supporters and hospital staff often needed guidance on how to support mouth-care needs of patients who did not understand the need for mouth care and who were non-compliant with it. Sometimes small suggestions made a difference, such as recommending a non-flavoured toothpaste.
Another aspect of the project was providing joint awareness training to the nursing staff which highlighted the impact of poor oral health and the importance of mouth care for patients with learning disabilities. It is important that other healthcare professionals involved in the care of people with learning disabilities in hospital receive training as well. This includes doctors, speech and language therapists, dieticians, occupational therapists and pharmacists.
Quarterly audits of patients assessed during the project showed that 78% of them needed mouth care support. There was very little variance in this rate between those patients living independently or receiving support from either families or paid staff.
The project has now finished, and, following evaluation, recommendations included:
- continued collaborative work between the MCM lead nurse and the LDLN
- ongoing training for staff about recognising the need for mouth care assessments of patients with learning disabilities, completing assessments, carrying out mouth-care plan and supporting patients who do not comply with mouth care
- ensuring staff know to contact LDLN and MCM lead nurse if further support is required
- LDLN to refer to Community Learning Disability Team if desensitisation to meet mouth care needs is required
- referrals to be made by MCM lead nurse or GP to Community Dental Service if required following discharge
- easy-read information to be given to patients about their own mouth-care needs
- leaflets to be developed for family carers and paid supporters to enable mouth-care needs are met following discharge
For further information, please contact Sarah Haslam: firstname.lastname@example.org
12.3 When general anaesthetic is needed
Even with reasonable adjustments in place, some people with learning disabilities will still not be able to tolerate dental investigations or treatment. A cross-sectional survey of adults with learning disabilities in Ireland (N=673) showed that 28% of them needed pharmacological behaviour support when receiving dental care[footnote 15].
A decision to undertake dental treatment under general anaesthetic (GA) may necessitate a best-interests decision in line with the principles of the Mental Capacity Act.
An independent mental capacity advocate (IMCA) describes one such case:
Simon has a moderate learning disability, is non-verbal and has a history of mental health problems. He lives on his own, in his own home, with twice daily support from a care provider, and he attends a day centre 4 times a week.
A community dentist identified that Simon had several dental issues requiring attention:
- chronic infection in a tooth that required extraction
- extraction of roots of missing teeth to improve oral health and prevent pain
- a hole in a tooth that could be restored
- a tooth that required a composite filling
It was noted that if the cavities were too deep to fill then all 3 teeth would need to be extracted.
The community dentist felt that Simon lacked capacity to take a decision about the proposed treatment and advised in a best interests meeting that he felt the treatment would need to be done under general anaesthetic in the local acute hospital with Simon going in as a day patient. He also said that a scale and polish could be done during the treatment procedure.
Simon would have required overnight supervision following the treatment, but his care provider was not funded for this. The local authority would not fund the cost of overnight care as they regarded this as a health issue and the acute hospital would not admit Simon overnight following surgery.
Simon was going to be referred to an acute hospital in another county, where they would remove the necessary teeth, under general anaesthetic with an overnight stay, but they could not undertake any of the other necessary work. This was deemed not to be the least restrictive option, and Simon was referred to an acute hospital in the capital.
At this acute hospital, the dental surgeon took enough time to explain everything to Simon. Simon said that he wanted to be awake for the treatment, and that he wanted to have it done under local anaesthetic. The dental surgeon deemed him to have capacity to consent to this and agreed to undertake the treatment in small steps.
Simon had an IMCA supporting him throughout this decision-making process. His IMCA felt that this was a good outcome for Simon but was concerned that a person with a moderate learning disability, who would not be able to summon assistance at home following general anaesthetic, was not entitled to support at home or overnight admission to a local acute hospital. Under the Mental Capacity Act people should be treated in their best interests and in the least restrictive way.
If it is necessary for someone to have a GA for planned dental work this presents an opportunity for other interventions to be done at the same time. A study of 100 people with severe learning disabilities who needed dental treatment under GA found that 7 had other medical interventions planned under GA, and 21 had recently had medical interventions abandoned[footnote 28]. They identified that a multidisciplinary approach would be possible for 25 of these 28 people. This approach means that it was possible to undertake such procedures as eye assessments, gastroenterological interventions and medical imaging alongside the dental treatment.
This holistic approach had benefits for the patient, in that the number of GAs they had was reduced, and they received medical investigations/treatment sooner. The potential financial savings are significant, but there is a need to address NHS contractual arrangements to ensure this is a sustainable approach. An additional benefit of this multidisciplinary working is improved inter-professional relationships between the dental team and other specialities.
The same dental hospital undertook routine blood tests for 100 patients with severe learning disabilities who were having a GA for dental care[footnote 29]. The blood tests revealed a single anomaly in 22% of the people and 2 or more in 69%. The most common findings were low vitamin D, followed by low haemoglobin (with 2 people needing urgent referrals for blood transfusions) and low iron serum levels. A quarter of the cohort had high cholesterol levels.
Routine blood tests at the time of dental treatment under GA can help with detecting unknown co-morbidities and are a cost-effective way of addressing the health inequalities in healthcare experienced by this group.
There is a template from Bradford District Care Trust that can be used to document someone’s behaviours and the reasonable adjustments they will need along with all the interventions to be undertaken while the person is under GA.
An example of how dental and medical treatment were co-ordinated for someone who required a GA:
A Senior Dental Officer in Lancashire Care NHS Foundation Dental Service was contacted by staff who supported an autistic man who had severe learning disabilities and challenging behaviour. He lived in his own house with support from a 24-hour team, with regular visits from his family. He had broken a tooth and was not thought to be in pain, but there was the risk of infection. He was unable to attend the dental clinic, and he was likely to become distressed and challenging if he had a home visit.
The dental officer spoke to his support staff who had kept the broken tooth and it was agreed they could take photos and share these with the dental officer. The service has a standard operating procedure for patients who require treatment under GA, and this was followed. After a capacity assessment was completed, he was referred to the specialist in special care dentistry who organised a best-interests meeting. This involved the specialist nurse in learning disability and autism at East Lancashire Hospital Trust. It was found that there were several other investigations which his team would like to have carried out while he was under GA to get the maximum benefit from this.
On the day he was admitted straight into the side recovery area in the theatre suite. This is a quiet space, and he was able to stay with his regular support team. He had nasal Midazolam which was a well-accepted route of administration as he likes to put things up his nose. The theatre team had been briefed, and everyone was aware of the plan and the potential challenges. While he was under GA:
- 2 dentists examined his mouth, took X-rays and did scaling, fillings and extractions
- bloods were taken
- urology examined him
- he was seen by the Ear, Nose and Throat team, as he tended to put things in his ears and nose, and they gave necessary treatment
His carers were kept informed and were there when he went back to recovery, so they could be there for him waking up. He was kept on the side ward for recovery and was able to go home the same day. His parents thanked the team for a smooth and stress-free experience.
For further information, please contact Hilary Teale: Hilary.Teale@lancashirecare.nhs.uk
12.4 Assessing local population needs
Despite the barriers faced by people with learning disabilities in accessing dental services, there has been minimal research exploring their perceptions and experiences. National surveys of the dental health of adults have often excluded people with learning disabilities.
Below is information about a local oral-health-needs assessment where the voices of children and adults with learning disabilities were included:
The school of clinical dentistry in Sheffield was commissioned to undertake oral health needs assessments of children and adults with learning disabilities. This involved a clinical examination, focus groups with children in special schools and with adults with learning disabilities living in the community alongside a questionnaire survey of adults on the learning disabilities case register. Appropriate data collections tools, including an easy-read questionnaire, were developed with input from advocacy groups for those with learning disabilities. The oral-health needs assessments were designed and informed by a stakeholder group consisting of representatives from Sheffield Healthwatch, public health, the community dental services and commissioners of services for people with learning disabilities. The learning disabilities parliament in Sheffield was also involved.
The findings were used to inform the development of a strategy for oral health improvement. For children in special schools it has resulted in an increase in supervised tooth brushing schemes in these schools and inclusion of special schools in a fluoride toothpaste distribution programme. For adults, oral-health training of staff in residential homes has been conducted, and dental practitioners have received disability-awareness training. The results also fed into a consultation run by Sheffield Healthwatch on urgent care.
Reports of the findings from the research with adults and children have been published and the data-collection methods and tools have been used in subsequent projects with people with learning disabilities.
For further information contact Kate Jones Kate.Jones@phe.gov.uk.
Some resources may be available from more than one site, but we have only given one link. We have only included resources that are free to download, although some of the websites may also include resources you can buy.
13.1 Resources for family carers or paid supporters
‘Mouth Care: Information for all Care Staff at Nursing and Residential Homes’ provides guidance on how to support people to have healthy teeth and gums,and includes an oral hygiene chart and oral care assessment.
‘Oral Health Care for People with Profound and Multiple Learning Disabilities’ provides guidelines to help maintain a good standard of oral hygiene.
The National Autistic Society has information on preparing for a visit to the dentist.
‘Help me to have a healthy mouth – toothbrushing’ is a 13-minute film providing guidance for carers of people with learning disabilities.
‘Help me to have a healthy mouth – time to brush’ is a 17-minute film providing guidance for carers on how to establish a good toothbrushing routine.
How social care staff can support people with learning disabilities to look after their eyes, teeth and ears is a short information sheet aimed at social care staff with information about looking after teeth.
How social care staff can recognise and manage pain in people with learning disabilities a short information sheet aimed at social care staff about pain management.
Quick guides to a healthy mouths in adults and children provides a summary of the simple steps that adults, parents, carers and children can take every day to protect and improve their oral health.
13.2 Resources for dental professionals
Professionals can use these resources:
‘Alan’s story’ is a 5 minute film about a man with severe learning disabilities and autism who had multiple treatments, including dental work, done under a general anaesthetic following a best interests decision
the ‘Find out how I show pain. I have a Learning Disability’ poster can be displayed in a clinical setting
‘Delivering better oral health: an evidence-based toolkit for prevention’ supports dental teams in improving their patient’s oral and general health
NHS ‘Quality Checkers Dental Self-Assessment Questionnaire’ is a self-assessment for dental services to assess how well they are doing at meeting standards of care
‘Making dental practices more autism-friendly’ explores various tips and strategies that can be used to support autistic people before and during visits to the dentist
13.3 Easy-read and accessible resources
These resources may be available from more than one website, but we have only given one link here:
‘Keeping my mouth healthy’ is an easy read checklist
guide to ‘looking after teeth and gums’
Community Dental Services (CDS) easy read dental booklet
information from People First about caring for your teeth
Don’t forget your toothbrush! is a slide set and quiz about the importance of brushing your teeth
Mouthcare Workbook encourages people to look after their teeth
leaflet with photos and Widget symbols about going to the dentist
information from People First covers topics such as brushing your teeth, seeing your dentist; community and specialist dental services and dentures
leaflet from Royal United Hospital Bath about what happens when you go for day surgery
an animated musical about oral hygiene made with learning disabled students and designed as an entertaining film that contains information and tips
a social story about what happens when you go for a fissure sealing.
‘What happens at the dentist’ social story is an example of a social story about what happens when you go for a dental check-up
Smile: checking the team at your dentist This leaflet is about going to the dentist and what will happen and what you can do if you are not happy with your treatment
information about NHS dental charges, how to claim free dental care and refunds. Easy read information is available by following the links at the bottom of the page
Golspie Dental Centre social story An example of a social story about what happens when you go for a dental check-up
13.4 Free apps to help with oral care
Brush DJ This toothbrush timer app plays 2 minutes of music from your devices, cloud or streaming service - to make toothbrushing for an effective length of time less boring.
MagnusCards helps people prepare for new situations and reinforces everyday routines, including brushing teeth.
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