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Your NHS dentistry and oral health update
Monday 17 May 2021
Better supporting our patients with a learning disability and autism: an update from Sara Hurley and Roger Banks
Dear colleague,
The NHS has a crucial role to play in helping people with a learning disability and autistic people to lead longer, happier and healthier lives. That's why in the Long Term Plan, the NHS committed to improving the level of awareness and understanding across the NHS of how best to support people with a learning disability and autistic people as patients. So that adjustments to care can be made to ensure that these groups of people get equal access to high quality care.
It's important to understand that people with a learning disability generally have higher rates of health problems than the general population, these may be undetected and untreated. They contribute to inequalities in mortality experienced by people with a learning disability.
This is certainly the case for oral health, where evidence shows greater unmet oral health needs, poorer access to dental services and less preventive dental interventions. And for those patients who require referral into secondary Special Care Dental Services there may be waiting times which mean primary dental care will continue to support the patient.
Autistic patients may find the experience of a dental check up itself distressing. The patient has to lie in a chair with a large light shining in their face, cold equipment in their mouth, reaching in close, noises from the drills and smells and tastes from the mouthwash and this may be difficult for a patient who is particularly sensitive to their environment.
Many patients with a learning disability, and those with additional support needs, can be successfully supported to achieve better oral health in primary dental care. They may need reasonable adjustments, such as additional time, accessible and focused pre-appointment information, clear communication with the individual and carers and support to manage anxiety or other issues that may impair their ability to engage with the assessment and treatment process.
The following information aims to help you support this patient group. We are happy to provide you not just with this information from so many trusted organisations, but the NHS' new easy read guide, too.
Thank you for your continued efforts to support people with a learning disability and autistic people to reduce inequalities in their health care. If you have any questions about how to support our patients with a learning disability or autistic people, or their families do drop the Chief Dental Officer's team a line at england.cdoexecutive@nhs.net
Sara & Roger
Sara Hurley
Chief Dental Officer England
Dr. Roger Banks
NHS National Clinical Director for Learning Disabilities and Autism
High risk factors leading to poor oral health
High risk factors leading to poor oral health may indicate the need for frequent recall appointments and more intensive preventative advice/treatment.
Factors that increase risk may include:
- Previous treatment under general anesthesia;
- High sugar diet including frequent use of thickening agents or high-calorie nutritional drinks;
- A requirement for additional oral care support e.g. people who cannot brush their teeth themselves;
- Frequent medication in liquid form where sugar-free options are not available.
Delivering better oral health: an evidence-based toolkit for prevention by Public Health England and the Department for Health and Social Care is the key resource which provides preventative oral health information and should be adhered to by dental care professionals.
Preparation for appointments and provision of information supports attendance
It's important to support the patient with the following key information before they attend their appointment:
- Dental clinics are safe and open for face-to-face care, however, call first to arrange an appointment. Do not attend a surgery without an appointment or if you are self-isolating;
- Urgent dental care appointments are being prioritised and there may be a delay to routine visits;
- There may be some changes to the dental clinic, e.g. entering the building or what staff will be wearing as part of their uniform. These measures are taken to make sure patients and staff are safe. All patients and carers are expected to wear fluid resistant surgical masks (FRSM) on entering, unless an exemption applies;
- Anxiety is common; encourage patients and carers to discuss any concerns before the appointment and anything that would help them to feel less anxious;
- Make information leaflets available in an easy read format (see below).
The key easy read documents for patients
Patients with a learning disability or autism may find these resources helpful.
All dental teams can now download our new easy read booklet ‘What can your NHS dentist do for you?’ It includes info on dental care treatments and costs in an accessible format for people with a learning disability and / or autism.
Click on the image to download the booklet. If you are having difficulty downloading, drop the Chief Dental Officer's team a line and we will send it over to you: england.cdoexecutive@nhs.net
Public Health England has a host of useful resources for you to use with patients and point patients and families towards.
Community Dental Services (CDS) is a Specialist Dental Provider and has produced a host of easy read patient information from tooth brushing, having your teeth cleaned, x-rays, teeth numbering and filling and more.
The NHS Business Services Authority has produced easy read dental fact sheet and supporting poster on who can have free NHS dental care.
Surrey Health Action has produced an online tool which creates an Easy Read Dentist Surgery Appointment letter and an easy read guide to looking after teeth and gums which practices can use.
Easy-read leaflets about treatments are also available, including:
Oral care and people with a learning disability: the key guidance from Public Health England
There is a legal obligation for dental services to make reasonable adjustments to ensure that their patients with a learning disability 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.
Public Health England's comprehensive guidance 'Oral care and people with learning disabilities' includes:
- resources that can be used to help dental teams deliver the best care;
- includes information on what we mean by a learning disability;
- what you might notice if someone has a learning disability;
- the barriers to good oral care and accessing dental services for people with learning disabilities;
- what we know about what works at an individual level, namely reducing anxiety and building a good relationship;
- examples of reasonable adjustments that people have found helpful in relation to dental care.
Advice on remote consultations
For many patients with additional needs and a learning disability, face-to-face appointments are needed to ensure effective communication and assessment of capacity to consent to treatment. However, the use of remote consultation may be used in conjunction with face-to-face appointments to discuss:
- Appointment plans for preparation to attend the surgery;
- Treatment options; the current PPE requirements necessitate the wearing of at least fluid resistant masks by the dental team. This can act as a barrier for effective communication. Therefore, discussing treatment options during a remote consultation may be appropriate;
- Oral disease risk factors and oral health promotion advice;
- Signs, symptoms and, if indicated, direct visualisation of oral lesions.
Remote consultation is not a substitute for face-to-face care and an in-surgery appointment should be arranged when indicated.
The NHS has produced a summary implementation toolkit for practices on using online consultations in primary care.
Communication with non-verbal patients: important things to consider
People with a learning disability may not say they are in pain. They may not act in a way that you would expect people in pain to act. It might be difficult to know if someone is in pain if they do not communicate verbally. People who have additional health needs, especially those who are immobile or use a wheelchair, are likely to suffer from long-term pain.
Sometimes when people are in pain they may display distressed behaviour which presents as challenging– this might include trying to hurt themselves or others. Other people may become quiet or withdrawn or they may show unusual behaviours like laughing or crying. This sort of change in behaviour should not just be assumed to be because they have a learning disability. They might be showing that they are in pain. Understanding what is 'normal' for that person by talking to them, their family and carers, is crucial to helping with assessment and diagnosis.
Some people believe that people with a learning disability can tolerate more pain than the general population. This is not true. People with a learning disability, like non-disabled people, will have individual and different responses to pain. It is important not to treat everybody with learning disabilities as though they can cope with a lot of pain.
More information can be found online from Public Health England here.
If a patient is unable to communicate verbally and they are having oral health problems, the signs to look out for are:
- Physical signs - redness, facial swelling;
- Behavioural signs - self injuries, biting, pointing to mouth, fingers in mouth, unexplained changes in behaviour;
- Facial expression of pain;
- Change in cooperation during oral care;
- Poor food intake or change in eating habits;
- Disturbance to regular sleeping pattern.
Dentistry and autism: research on parental experiences
Nicole Thomas is a dental hygienist who, inspired by her work and own experience, carried out research on parents' views of visiting the dentist with their autistic child. Nicole and the team found that five factors needed to be present to increase the chance of dental check-up success; success was defined as a visit to the dentist where a basic examination of the child’s teeth was achieved with no adverse effects during the examination or after the event.
The factors are:
- Parent and carer confidence in approaching the dentist when issues arose;
- Dental team flexibility, i.e. teams that took time to respond flexibly to parental requests for support had more positive experiences;
- Continuation of service was important, for example providing information on what to expect before a check-up and making thorough notes so parents did not have to repeat themselves at every appointment;
- Dentists knowing when and where to refer a child to specialist dental services, thus avoiding delays in children getting the dental care that was appropriate for them outside of the high street dental setting;
- Clear and open communication between parents, patients and the dental teams.
Nicole discusses the research, its aims, findings and the wider implications for dentistry in this useful post on the National Autistic Society's website.
Dental care for patients with autism: guides from the National Autistic Society
The National Autistic Society has created useful guides for autistic adults, parents and carers and dentists on autism and dentistry.
As the society says, autism is a lifelong, developmental disability that affects how a person communicates with and relates to other people, and how they experience the world around them.
Some people may not understand why healthy teeth and gums are important and what happens if you don’t have regular check-ups at the dentist and the experience itself can be distressing. The patient has to lie in a chair with a large light shining in their face. The dentist puts cold equipment in their mouth, reaching in close. There are noises from the drills and smells and tastes from the mouthwash.
The National Autistic Society's guide for dentists looks at what you can do before and after treatment to make the experience less so, covering:
- Patient understanding;
- Sensory issues;
- Invasion of personal space;
- Reasonable adjustments in providing dental treatment.
The full guides from the National Autistic Society are online:
British Society of Paediatric Dentistry's advice for parents of children with autism
The British Society of Paediatric Dentistry has published guidance in support of parents of children with autism. The guide covers all aspects of children’s dental health from introducing the child to tooth brushing at home to preparing for dental appointments.
There is evidence to suggest that some parents of children with autism are hesitant about taking their child to the dentist for the first time. This can be for a number of reasons but many are anxious about how their child will react to the new situation.
The aim of the guide is to provide practical advice to help parents get their child off to a good start with their dental hygiene and make the first visit to the dentist a positive experience.
Wendy Bellis, Specialist Paediatric Dentist and Honorary Clinical Senior Teaching Fellow at the Eastman Dental Institute, London, wrote the content which also benefited from the input of The National Autistic Society (NAS).
You can find the guidance online at the BSPD's website. Please do share this with any parents of children with autism who you are treating.
E-learning programme to support delivering dental care to children with a learning disability and / or autism
Some children and young people with a learning disability and / or autism can have difficulties understanding, receiving, and responding to information and may experience sensory processing difficulties. People with these issues may have an adverse reaction to anything that under or overstimulates their senses, such as light, sound, touch, taste, or smell. This can affect their behaviour and ability to interact with other people making it more difficult for them to access health checks.
The delivering sensory health services e-learning programme is designed to support dentists and their teams who carry out these sensory health checks. The programme outlines:
- What to consider when communicating with children and young people and their families in these schools or colleges;
- How to work with other professionals to help support whilst in situ and provide this support;
- To help prepare beforehand in order to understand how a particular school or college works;
- Specific topics on autism and behaviours that can be a challenge and what sensory impairment means to the patient;
- How to reduce/avoid this sensory overload whilst caring for the individual.
More information, including how to register for the programme is on the e-learning for Healthcare website.
Referrals to special care and domiciliary services
It is important that you know your local Community Dental, Special Care Dental and Domiciliary services referral pathways, criteria and current waiting list times. There may be delays, particularly for treatment under general anesthesia and conscious sedation.
Support patients in your practice whilst on referral waiting lists by promoting good oral hygiene practices and managing urgent dental needs.
Contact your commissioner for further information if you are unsure of these pathways.
Other helpful pieces of information
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.
Royal College of Surgeons of England recommendations for special care dentistry during the Covid 19-pandemic 2020 gives advice and guidance for the triage, assessment and provision of urgent dental care for those requiring special care dentistry during the COVID-19 pandemic and is intended for use by the NHS staff working in England.
Royal College of Surgeons of England recommendations for special care dentistry during the recovery phase of Covid 19-pandemic 2020 gives guidance to support the delivery of oral health care during the COVID-19 recovery and is intended for use by dental teams working in England.
Oral Health Foundation: Dental Care for people with special needs is a useful Q&A for patients with special needs on dental care.
PHE Safeguarding in general dental practice: A toolkit for dental teams reinforces the importance of safeguarding to dental teams and makes them aware of the different forms of abuse.
By word of mouth ... the colleagues we're all talking about!
Una Monaghan Clinical Director of the Special Care Dental Service at Hertfordshire Community NHS Trust leads a great team who have been focusing on improving oral health for the learning disability community.
Following a planned engagement piece in 2018 looking at improving services for patients with learning disabilities the service worked with an expert by experience who has a learning disability. As a consequence of the insights gained they adapted one of their clinics to improve accessibility, created videos to promote oral health and introduced targeted nurse-led oral health promotion clinics.
The team have found that patients have responded positively with multiple compliments:
“The help and compassion you have shown has been excellent. I could not thank you more for everything you have done for me. This is a fantastic service"
“You will pass on my thanks won’t you to everyone. When I was at work we used to say about going the extra mile. Well everyone here today, the whole team, that was really going the mile and thank you.”
There was often marked improvement in patients with long standing poor oral health who have not responded to previous health promotion. This approach could potentially go some way to address long term health inequalities.Una and her team were very proud to win a national NHS elect award for patient experience in December 2019.
On behalf of the whole NHS, well done to the team in Hertfordshire!
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Previous NHS dentistry and oral health updates
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A reminder of the latest COVID-19 advice and guidance
NHS updates to the profession
Previous updates from the Chief Dental Officer and the NHS dentistry and oral health team are all online here.
Transition to Recovery: Dentistry's standard operating procedure
The latest version was published on Tuesday 3 February 2021 . Changes to the previous SOP are in yellow. You can read the SOP online here.
Urgent Dental Centres: Standard Operating Procedure
Changes to the previous SOP are in yellow. It was updated on Tuesday 3 February 2021 and is online here.
COVID-19: infection prevention and control dental guidance
The guidance is an appendix to and should be read in conjunction with the national guidance on infection prevention and control for COVID-19 . You can read the general guidance and the specialist dental appendix online here.
