Eating, drinking and swallowing

Causes of eating, drinking and swallowing difficulties  

EDS difficulties can be caused by different conditions, or they may be the first or only symptom of a condition. Assessments are needed to understand what is happening.  

EDS difficulties can lead to problems with malnourishment, dehydration, respiratory infections, weight loss, or poor growth in babies and children.  These can sometimes cause serious health problems and death. People with EDS difficulties and their families may feel their wellbeing and quality of life is affected.   

 In both children and adults, EDS difficulties can happen suddenly and/or get worse over time.  They can improve or stay the same. Sometimes there are periods during the day when someone finds EDS easier than at other times, aim to encourage people to eat and drink more at these times. 

EDS are affected by lots of factors. These include muscle strength and coordination, posture, size and texture of food and drinks, pain, illness, changes in taste, feeling sick, ageing, thinking, tiredness, breathing, and heart problems. Some conditions may be present from when a baby is developing in the womb and right across the life span.  

EDS difficulties in children can be due to different conditions including:   

• Prematurity (Being born early) 
• Childhood onset disability 
• Cancer/tumours  
• Cerebral palsy  
• Infectious diseases, e.g. meningitis  
• Neuromuscular diseases  
• Breathing disorders 
• Heart disorder 
• Digestive tract difficulties 
• Problems with the parts of the head and neck needed to swallow e.g. cleft palate 
• Congenital syndromes, e.g. Prader-Willi, babies with Down’s syndrome  
• Learning disability  

Some autistic children and adults may have difficulties and/or differences when eating and drinking due to sensory differences. This may be related to the smell, texture and predictability of food or drinks e.g. a biscuit may taste the same every time, but an apple may taste, sharp, bitter, sweet, juicy depending on the variety. This may be particularly true for children who had previously had negative experiences around food e.g. choking. 

EDS difficulties in adults can occur because of a range of medical disorders. These can include:    

• Ageing and frailty  
• Heart disorders  
• Covid and Long Covid  
• Functional neurological disorders (FND)  
• Head and neck cancer  
• Mental health conditions 
• Neurological disorders – e.g.  stroke, Parkinson’s disease, Motor Neurone Disease, Multiple Sclerosis, Progressive Supranuclear Palsy, Dementia  
• Oncology/cancer – lung cancer, brain tumour  
• Breathing difficulties e.g. chronic obstructive pulmonary disease  
• Surgery – surgery to any of the body parts related to swallowing can affect EDS  
• Trauma – this may be related to the spine, face, brain or other parts of the breathing or digestive tracts 
• Tracheostomy (breathing tubes) 

Impact of eating, drinking and swallowing difficulties

Difficulties with EDS may have serious consequences and can impact on a person’s quality of life. This may be due to embarrassment, lack of enjoyment of food, or not being able to join-in in food-related social activities e.g. weddings, birthdays. 

People may find that food, drink or saliva can escape from their mouth. They may find chewing difficult or take a long time to finish a meal.  A dry mouth or problems with the gums or teeth may cause problems chewing.  People may find that food or drinks come out of their nose after swallowing. Some find that food gets stuck in their mouth, throat or behind their breastbone. Food or drinks may feel like they have ‘gone the wrong way’ and cause people to cough or choke.  Some people may vomit or bring food or drinks back up after swallowing.  How someone’s voice sounds after they swallow may change e.g. it may sound wet or hoarse or they may feel out of breath when EDS.  The person may be in pain whilst eating or drinking.  These difficulties make EDS more difficult, and the person may start to lose weight, become scared to eat or drink and not enjoy it anymore, or they may have lots of chest infections. Some people may also find that swallowing medication is difficult. 

Some babies may have complex medical needs and may need to spend time in hospital. These babies may have problems with feeding. They may struggle to latch onto a nipple or teat.  Babies need to be able to coordinate sucking, swallowing, and breathing.  Some find this difficult. They may have difficulties getting the milk to flow from the breast or bottle. Some may cough, choke, or gag when feeding. These feeding difficulties can cause chest infections, or they may not put on weight or not put on as much as would be expected. 

For children, getting the right amount and variety of food and drink is essential for their bodies and brain to grow. EDS difficulties may mean the child struggles to be part of mealtimes or may eat and drink differently. This can cause stress for the child and family. 

For elderly people, EDS problems can make existing problems such as diabetes and healing worse.  Difficulty with swallowing can also cause them to worry at mealtimes.  This may be because they do not want to eat alone for fear of choking, or they feel embarrassed at their slow and unusual eating behaviour. 

Role of speech and language therapy 

SLTs have a key role in identifying and managing EDS difficulties. These difficulties may be caused by lots of other conditions e.g. problems with the brain or the head and neck.  They work as part of a multidisciplinary team (MDT). This means they will work with other professionals to ensure the right care is given. For example, if a person has Parkinson’s and struggles to lift a cup without spilling it, they will work with the occupational therapist to see if different cups are available to make it easier and safer to drink, or if a person has difficulty sitting in an upright position for eating they may work with a physiotherapist to maximise the person’s posture.

If you are referred to an SLT they will: 

• Gather information from the person and their caregivers about the difficulties they are having.  
• Carry out a detailed assessment to understand why the person is having these difficulties and working with them and their family to plan therapy to address them. 
• Look at any risks around EDS such as choking, coughing and chest infections and work with the person to find ways to reduce these risks.   
• Put the person at the centre of all decisions and consider what is important to them.  This may be things that give their life quality, what they believe, what they would prefer and the impact on the family.  
• Work with other members of the team, particularly dieticians, to support the person to get the right quantity and quality of food and drinks.  
• Enable a safe and effective eating and drinking experience for the individual through giving advice on ways to swallow, recommended positions for swallowing, strategies and exercises 
• Give advice on changes to the way food or drink is presented to make swallowing easier.  

EDS assessments

Adults

Adults can be referred to speech and language therapy for an assessment in a variety of ways.  They may see their GP, consultant, or other health professionals who can refer someone to an SLT.  Some adults, particularly those in hospital, may have a trained professional carry out a swallow screen. This is a simple test to see if the person needs a referral to speech and language therapy or not. Most speech and language therapy services will accept a self-referral however please check with your local service as this may vary.  Once a referral has been made the speech and language therapy service will gather information from different places to gain an understanding of the person’s difficulties.  This can include: 

• looking at their medical records 
• talking to the person and/or their caregivers 
• talking to other professionals involved in their care. 

Following this, the SLT will carry out an eating, drinking and swallowing assessment.  As part of the assessment, they will: 

• talk to the person and/or their caregivers about their current EDS difficulties or if they have had any difficulties in the past 
• look in the persons mouth and ask them to move parts of their face, mouth, lips, and tongue to help identify if there are any problems 
• ask the person to have different things to eat and drink and may rest their hand on the person’s neck to feel as they swallow 
• watch at mealtime to see how the person is able to eat and drink. 

The SLT combines all the information they have learned and may discuss the following: 

• Diagnosis of specific EDS difficulties and how severe these are. 
• Different options and agree with the person and/or caregiver an EDS plan to help manage the difficulties. 
• If the person needs support to stay well-nourished and hydrated, they will talk about onward referrals to e.g. dietitian.  
• How their EDS may change over time. 
• Referral to other services or professionals e.g. pharmacy if the person is having difficulties swallowing medication.  
• Referral for more detailed assessments of swallowing. This may be a swallowing x-ray called a videofluoroscopy, the use of a small camera to look at the throat whilst swallowing or using a small tube with sensors to measure the strength and coordination of the throat and food pipe. 
• Education for the person and those around them (family/carers) to support their understanding of the EDS difficulties and the decisions made for their care. 

Babies who need neonatal care 

In the neonatal unit the SLT is a key member of the team and will work closely with the nurses, doctors, and other professionals to support the baby and their family. Some babies may not be ready to try breast or bottle feeding and may be fed through a tube. The SLT can work with a family to understand how they can help their baby to learn the skills they need to be able to swallow when the time comes. They will speak to the parents, and other health professionals and gather information from the medical records to understand what difficulties the baby may be having and how best to support these. When the baby is ready to start having milk through their mouths, the SLT will complete an assessment. They are assessing many different aspects of swallowing e.g. can the baby latch on, how strong is their sucking, do they tire easily, does their breathing change when feeding. The SLT will consider all the information they have learned and talk to the medics and family about the baby’s swallowing. They will give advice on how best to support feeding, they will talk about how feeding skills may develop over time, and they may ask other professionals to become involved e.g. dietitian. The SLT will provide ongoing support and management of feeding whilst in the neonatal unit and will ask another SLT to follow up once the baby is discharged home, if needed. 

Children

Some children may have had EDS difficulties from birth, others may develop difficulties as they get older or because of damage to the brain or any of the other parts of the body needed to swallow. Assessments are individual to each child and their needs and may include: 

1. Observing the child. This may need to happen in a variety of places including hospital, care facilities, the child’s home and school.    
2. A detailed case history. This includes understanding how the child is developing and growing, how their eating and drinking has changed over time and if they have any specific behaviours around food, drink or mealtimes.  
3. Talking to the caregiver about how they support the child’s eating and drinking. 
4. Looking at the muscles and body parts needed to eat and drink e.g. lips, teeth, tongue.    
5. Talking about keeping the child’s mouth clean e.g. using toothbrushes, toothpastes and how the child responds to these.    
6. Watching the child at mealtimes. The SLT is looking at how the child eats and drinks different textures, how much help they need and if they have any different behaviours at mealtimes.  

Eating, drinking and swallowing interventions and management for adults

After having a detailed EDS assessment, the SLT will work with the person and/or their caregivers/family to agree how best to support them. The SLT aims to support the service user’s potential to have food and drinks orally, to improve their experiences around food and drink by understanding what is important to them, to reduce the risk of food or drink going the wrong way onto the lungs or causing coughing or choking and to try to avoid any negative health problems which may be a result of EDS difficulties. 

Intervention may include:   

• Working with the person and/or their caregiver to develop a management plan.  When discussing the plan, the SLT will explain any concerns about how safely or effectively the person can swallow. They may talk to them about normal swallowing, the nature of the person’s EDS difficulties, and support them to understand how their difficulties may change over time.  
• Talking about different types of therapy which may help to improve how they can swallow or slow down how quickly it changes. 
• Talking about other ways to support EDS, for example how a busy, noisy dining room may be overwhelming for some people meaning they cannot concentrate on their swallowing. 
• Discussing how the EDS difficulties are affecting the amount and quality of food and drinks they are having and how the person can be supported to stay well-nourished and hydrated.    

Therapeutic strategies and interventions    

The SLT will discuss which interventions are available and most appropriate to use.  Broadly, interventions fall into two groups: rehabilitation or compensation.   

Rehabilitation could be exercises which aim to make a lasting change to the individual’s swallowing.  Compensation aims to make changes to how the person eats or drinks. They can include changing the texture of food and drinks.  

Texture modification   

Texture modification means changing the texture of food or drinks. This may be changing the thickness of drinks and/or changing the texture of foods. The SLT may refer to different levels of food or drinks, further information on these levels can be found at the International Dysphagia Diet Standardisation Initiative (IDDSI).  

When recommending a person changes their drinks or food the SLT will consider the following:  

• How changing the texture changes what happens when the person swallows ? 
• Will changing the texture stop food and drinks going the wrong way i.e. aspiration where food and/or drink go into the lungs rather than into the stomach.  
• Will changing the texture mean the person is more likely to become malnourished or dehydrated.  
• What does the person and their caregivers want and how will this impact on quality of life.  
• Will changing the texture impact on other aspects of the person’s health and should other professionals be involved e.g. dietitian or pharmacist 

 For more information on modified drinks please see our information sheet which is available as an easy read version for adults and an easy read version for children. 

Intervention and management – neonates  

Feeding interventions are delivered as part of the MDT. All decisions take a family centred approach which aims to support and develop oral suck feeding.  Feeding experiences should be enjoyable for both the baby and carer.  When babies are born early or unwell they may not be ready to be fed orally. The SLT can support the baby and family to put things in place which may help them move towards oral feeding.  For example, having skin to skin contact in the delivery room, having buccal colostrum within the  first six hours, cleaning the baby’s mouth, encouraging the baby to suck, and supporting tube feeding may help the baby to develop. Mother’s breast milk is the best form of feeding for preterm babies and has lots of benefits. The SLTs can support mothers to learn how to express milk and keep their milk supply going by activities such as having skin to skin contact, expressing regularly at cot side or whilst in skin-to-skin contact, show them how to position the baby for the best latch, how to pace feeding and how to manage breast discomfort whilst learning to breastfeed. 

If the baby is bottle fed with expressed breast milk or formula, the SLT can support feeding by giving advice on the choice of bottle and/or teat, how to pace feeding, how to position the baby, and advice on how much the baby should have over set periods of time.  Babies born premature and/or with complex medical conditions may have ongoing feeding and/or swallowing difficulties. These babies may need long term tube feeding support with ongoing support from the SLT with the ultimate aim of eating and drinking through their mouths.   

Intervention and management – children

SLTs aims to support the child’s potential to eat and/or drink through their mouths, to stay hydrated and well-nourished and support the child to take part in EDS activities that improve their quality of life. They will also look to manage and reduce the risk of aspiration (food or drink going into the lungs), choking, and other negative effects on health and well-being.  It is important to consider how the child is developing and how this may change in the future.    

Intervention may include:    

• Working with the child, families, carers, MDT and education staff to develop a plan for managing EDS. This should consider how they are developing, how well-nourished they are, how well-hydrated they are, how they are growing, and how much effort is required when EDS by mouth.      
• Giving advice or working with other members of the child’s team to make sure they have any related needs met that could impact on EDS.  For example, does the child have seating that supports them, does the place where they eat promote a nurturing approach to eating, do support staff know the best ways to support the child.  
• Giving advice and supporting the child and their team to use compensatory and behavioural strategies to improve EDS. This may include changing the texture of food or drinks, altering the way it is given or advising to eat small amounts at various points in the day. 
• Advising on changes to where the child eats or drinks or if they need any specialised equipment. This may include working with parents to help reduce stress around mealtimes or by recommending different types of cups to encourage the child to feed themselves. 
• Giving advice on keeping the child’s mouth clean and healthy, making referrals on to specialist services such as dentists when needed. Discussing how feelings inside the mouth can affect EDS and giving advice on how to support this.  Discussing the link between harmful bacteria in the mouth which can get into the lungs through e.g. saliva and how this can cause chest problems.   
• Training and advising parents / carers/ education professionals on how best to support the child. 

Therapeutic strategies and interventions     

An SLT will discuss which interventions are the most appropriate for the child.  This is based on the results of their assessments and discussions with the child, family and members of the team. Interventions will be different depending on the needs of the child. The SLT will take into consideration their developmental stage, any underlying health conditions, how they may change over time, and the views of the child and their caregivers which may include understanding any advanced directives in place.     

Interventions may be to support the child at their developmental level, to improve their EDS, or to compensate for EDS difficulties by e.g. changing the texture of food and/or drinks. Some children may have a life limiting condition. The SLT can support palliative and end of life EDS interventions and will work closely with the child, family and team to support their quality of life.          

Texture modification

The SLT may recommend changing the texture of food or drinks, or changing the temperature or portion size to support EDS. The SLT may use specific terminology to refer to different texture levels of food and the consistency of drinks. This follows the International Dysphagia Diet Standardisation Initiative (IDDSI).  For more information, please see the IDDSI website.    

Making recommendations to change a child’s texture of food or drinks is a complex decision. The SLT will have taken onboard a variety of factors including the child and family’s view.  For more information on changing the texture of drinks please see our information leaflet on thickened fluids or our thickened fluids easy read information for children.  

EDS devices

There are a range of products that claim they may be used in the treatment of EDS disorders for children and adults. Some devices have strong research showing how well they work whereas others do not. Generally, they aim to improve how well the person can swallow. Other devices also aim to develop and maintain movements of the mouth, tongue, and lips to improve EDS. 

Your SLT may recommend a device based on your specific EDS difficulties. It is important to speak to your SLT before using these devices as they may not be suitable for everyone.  More detailed information on some of these devices is available.                         

RCSLT resources 

For more information plead read our factsheets:

• RCSLT factsheet on dysphagia (PDF)
• RCSLT factsheet on infant dysphagia (PDF)
• RCSLT factsheet on dysphagia and head and neck cancer (PDF)

You may also find the following content useful: 

• Eating and drinking with acknowledged risks

Videos

• Edna’s story – the impact of speech and language therapy  
• Benefits of FEES (National tracheostomy safety project)  
• Giving Voice – Communication & Swallowing in the Hospital  
• Giving Voice – Communication & Swallowing in Mental Health  
• Giving Voice – Communication & Swallowing in the Community  
• Adult Speech and Language Therapy at Darent Valley Hospital, Kent, UK    

Key organisations

• BAPEN  
• British Dietetics Association  
• BLISS – the premature baby charity  
• Dementia UK  
• Dysphagia Research Society  
• Hospital Caterers Association  
• International Dysphagia Diet Standardisation Initiative  
• Motor Neurone Disease association  
• Multiple Sclerosis society  
• Muscular Dystrophy UK  
• National association of laryngectomy clubs  
• National foundation of swallowing disorders  
• National Nurses Nutrition Group  
• NHS Improvement  
• Parkinson’s UK  
• PSP association  
• Together for Short Lives  
• UK Swallow Research Group  
• United Kingdom acquired brain injury forum  

Contributors

Lead author

Dr Sue Pownall, Independent Consultant Speech and Language Therapist

Supporting authors

• Anita Smith, Head of Service and Dysphagia Lead Speech and language therapist 
• Caroline Weighton, Deputy Head of Speech and language therapy, dysphagia lead 
• Dr Gemma Clunie, Lead Clinical Academic for allied health professions and Honorary Clinical Research Fellow 
• James Reid, Specialist Advisor Speech and Language Therapist 
• Joanne Marks, Professional Lead Speech and Language Therapist and Neonatal Operational Delivery Network Lead Speech and Language Therapist 
• Dr Kate Toft, Highly specialist Speech and Language Therapist and lecturer in speech and language therapy 
• Katy Parnell, Clinical Lead Neonatal Speech and Language Therapist 
• Kim Ferrari, Lead Speech and Language Therapist 
• Konstantinos Smaragdis, Highly Specialist Speech and Language Therapist and Clinical Lead for dysphagia 
• Laura Banci, Professional Lead Speech and Language Therapist for acute and secondary services 
• Lauren Bell, Consultant Speech and Language Therapist 
• Lorraine Coulter, Lead Professional for speech and language therapy and Allied Health Professional’s manager for children’s services 
• Natalie Wray, Specialist Speech and Language Therapist 
• Sam Bradley, Professional Head of Speech and language therapy 

With special thanks to Caroline Weighton, Joanne Marks, Katy Parnell, Konstantinos Smaragdis, Lauren Bell and Natalie Wray for writing sections of this guidance. 

Experts by experience

Emma Sullivan
Jamie Preece
Kate Ashby-Smith
Sarah Wood