A guide to eating issues for disabled people, primarily those with cerebral palsy.

Introduction to eating difficulties

Some people with cerebral palsy may have difficulty eating. This may be apparent soon after birth, with babies experiencing problems feeding either from the breast or bottle, or may start later in life.

There can be a number of reasons why someone may be having difficulty eating. Possible causes include structural abnormalities, psychological or behavioural conditions, motor or sensory impairments, or something unrelated to their condition. Due to the diverse nature of such difficulties it is necessary to take a multi-disciplinary team approach to investigating and working on them. The team should include a speech and language therapist, a physiotherapist, an occupational therapist, a dietician, a doctor, a health visitor (in the case of children), district or community nurse (in the case of adults), the person’s carers and, if appropriate, the disabled person themselves.

If you are a disabled person with concerns about eating or you are a carer concerned about someone you know, then it is important that you seek advice and support. The first step is getting an assessment. You may already be in contact with the health professionals, who will form part of the multidisciplinary team. If so, you can express your concerns to them. Alternatively, contact your local speech and language department, they will have access to a therapist specialising in such matters. If you are finding it difficult to access assistance or are uncertain who to talk to, you will find your GP a good starting point for getting specialist help.

It is important to remember that mealtimes are not just about eating but can also provide a valuable opportunity for communication and social interaction. They should be enjoyable occasions and as stress-free as possible.

The early years

Some babies with cerebral palsy may experience difficulties with sucking, either from the breast or bottle. It is important to remember that many new babies experience initial problems latching onto the nipple or teat and that it does not necessarily imply that a baby has cerebral palsy. Seeking early advice on any feeding difficulty is recommended. Nursing staff on the maternity ward are often able to assist. There may even be a specialist nurse advisor available. Once the baby is home, the Health Visitor should be able to advise if the problem persists.

Unless there is a good medical reason not to, babies with cerebral palsy or similar impairments should start to be weaned at the same age as babies without the condition, and current recommendations are that this should start around five-six months. The baby's health visitor should be able to advise on issues to do with weaning. The speech and language therapist is also a very useful person to seek advice. Weaning may take longer than it would for a child who doesn't have cerebral palsy, and considerable persistence may be needed. It can be a frustrating process and so the person responsible for helping the baby to progress from milk, to semi-solids and then chewable food, may need a lot of support. Many babies with cerebral palsy find eating semi-solid food easier than sucking and so may thrive better once they have begun to be weaned. Prolonged use of bottle-feeding should be avoided but not at the expense of nutritional or fluid intake.

Growing up and gaining more independence

Many people would prefer to be able to sit at the table and feed themselves, even if it takes longer or is messier than being assisted to eat by someone else. Being able to choose what one eats and when one eats it is one of life's pleasures for many people. Most children will learn to feed themselves to some degree eventually. Taking the time and effort to help a person to develop these skills can sometimes also help them in other ways, such as language development, greater awareness of position and movements and hand-eye co-ordination.

The following is a brief introduction to some of the issues that might be relevant to mealtimes, for either children or adults with cerebral palsy. It is not intended to be comprehensive or to be used for diagnostic purposes. If in doubt always seek professional guidance.

Bite reflex

This is when the person being fed immediately 'locks' their mouth onto anything that is introduced into it. They have no control of this and it may only happen occasionally. Sometimes a speech and language therapist can advise on techniques that may help with this and demonstrate how to 'unlock' the jaw if the reflex occurs. The use of a plastic spoon will lessen the chance of injury to the mouth or damage to the teeth.

Choking

This is often caused by poor positioning of the head and trunk. Regular choking can cause considerable anxiety at mealtimes for both the enabler and the disabled person. In the worst case scenario it may even result in death. Receiving advice about how to react to choking may help lessen any anxiety and make those concerned more confident that they know how to react in an emergency. A doctor, physiotherapist or speech and language therapist should be able to advise. Persistent choking should always be investigated by the doctor.

Constipation

This is common in people with cerebral palsy, especially if they have reduced mobility. An underlying medical problem, poor diet and/or inadequate fluid intake may be the cause. Often the situation can be improved by adding more fruit, vegetables and whole grains to the person’s diet. If the problem is happening frequently, the advice of the general practitioner should be sought.

Dental care

Sometimes difficulty in feeding can result from the way the teeth close together or as a result of pain caused by a dental problem. No one should neglect their dental care but for some people with cerebral palsy it is especially important because they may take certain medicines that can increase the risk of gum problems. Good oral hygiene can be more difficult for those that have limited control in opening their mouth, a bite reflex or are reliant on others to clean their teeth for them. Frequent and regular check-ups at the dentist are therefore recommended. It is also possible to seek assistance from specialist dentists. Read our factsheet on dental care.

Diet

A nourishing and balanced diet is an important factor in maintaining health and well-being. This can sometimes be difficult to do for some people who experience difficulty eating, especially if they can only eat certain types of food or can only manage small amounts. Some people with cerebral palsy experience a lot of involuntary movements. These movements burn up energy, which needs to be taken into account when the person’s diet is being planned. A person with cerebral palsy may need to consume extra calories to compensate for the additional movement.

Sometimes a food supplement is suggested or prescribed to help ensure that a person’s nutritional needs are being met.

Health Visitors can advise on food consistencies and suitable diets to wean babies onto. The advice of a dietician may be helpful, both for children and adults. Speech and language therapists can also advise especially in relation to the food texture and consistency an individual will find most manageable.

Dysphagia

This is a technical term for swallowing difficulties.

Equipment and utensils

Most babies can normally be fed with the ordinary spoons designed for young children and readily available in high street stores. As children mature and begin to attempt to feed themselves, there are as number of utensils that may be helpful. Special plates, bowls, cups, adapted cutlery and non-slip mats to help keep the dish in place are all available. Also there are specialist bibs and other items to help keep food off clothing. The occupational therapist should be able to advise what would be most appropriate and how it can be obtained.

When items are being obtained for adults it is important to consider whether the appearance of them makes them suitable for someone of that age. Equipment and utensils should enhance a person's sense of self-reliance and independence and be age appropriate.

For those who experience poor trunk control or are unable to support their own heads, specialist supportive furniture may be recommended by the professionals working with the person. Sometimes it is necessary for the person assisting with eating to help support the head with their hand. A person should never be fed with their head falling backwards as this will cause a possible risk of choking or vomiting.

There is also high-tech equipment available to assist adults in having a greater degree of independence at mealtimes. These take various forms, such as a robotic arm that moves food from the bowl to the mouth. Such things are not necessary or suitable for the majority of people with cerebral palsy and often have to be independently funded.

Excessive drooling

This difficulty can be particularly troublesome for a person who has no awareness that they are dribbling or is unable to wipe their mouth themselves. In addition to making mealtimes messier it has potential social implications and can sometimes result in the chin becoming sore. Read more on drooling.

Feeding and swallowing advisory clinics

There are a small number of specialist clinics in the United Kingdom. They may be able to assist, should the advice received from the multi-disciplinary team prove not to be sufficient. In order to attend a specialist clinic it is normally necessary to obtain a referral from a health professional.

High palate

This is not uncommon in people with cerebral palsy. Should food gather in this space, it is likely to stick there. If this occurs it needs to be removed during the meal to avoid the possibility that it may later drop down and cause choking.

Hypersensitivity

Some disabled people will experience additional difficulty with eating because they are unusually sensitive to being touched on their face or in their mouth. Similarly, they may have a strong reaction to the temperature or texture of their food or drink. A speech therapist or occupational therapist may be able to advise on ways of working on this. Often a programme of activities to gradually get the person used to such sensations and build up their tolerance to them may be recommended.

Non-oral feeding

This may be necessary for some people who are not able to suck or swallow adequately to get proper nutrition or to avoid food passing into the lungs rather than the stomach.

The most common type is naso-gastric, where a tube is inserted up the nose in order to pass food into the stomach.

Some disabled people are fitted with a gastrostomy tube (often naso-gastric tube feeding will have been tried first). A tube is surgically inserted directly into the stomach through a small incision made into the abdomen.

Both naso-gastric and gastrostomy tube feeding have been shown to be helpful in assisting disabled people with feeding and nutritional issues. Tube feeding may be a short-term procedure but occasionally it needs to be permanent. Sometimes a combination of tube and conventional feeding is recommended.

If you are responsible for the care of someone who is being tube fed, it is important to ensure that you are confident and comfortable with what needs to be done. Support and advice should be available from the doctors, nurses and therapists at the hospital. There are also specialist support organisations (see resources list). Remember that those being tube fed should still be included in the social interaction of mealtimes.

Positioning

It is important for the disabled person to be in the best possible position for eating. This will vary from person to person depending on their medical condition. The physiotherapist or occupational therapist, together with the speech and language therapist, are the best people to advise on positioning.

Reflux

This is a problem resulting in discomfort during or after eating. On occasions it may cause vomiting. There are several reasons for reflux such as medical or anatomical problems, allergy, or limited movement patterns. Investigation by the GP is suggested in the first instance.

Supplements

See Diet.

Tongue thrust

This occurs when there is a strong, inappropriate and unconscious forward movement of the tongue that pushes food out of the mouth. This should not be confused with behaviour that looks similar but is really a conscious attempt by the person to communicate that they do not wish to eat what is in their mouth. It is worth seeking professional advice, normally from a speech and language therapist, on techniques that may help with tongue thrust.

Tube feeding

See Non-oral Feeding. There is information for children and parents at www.scope.org.uk/pegted

Vomiting

Frequent vomiting maybe distressing for all concerned and should always be investigated. Sometimes the problem can be helped by improved positioning and avoiding lying down too soon after eating. If this doesn't help, seek the advice of your GP, as the causes of the vomiting may need to be investigated.

Scope publications

Food Talks - Practical tips to include children with eating difficulties
This publication is quite old but may still be useful. It contains practical tips to include children with eating difficulties and is a useful resource for parents/carers and hands-on professionals alike.

The pack looks at general difficulties associated with eating including reflux, swallowing and tube feeding, gives practical suggestions on fitting in and telling others, a useful tips section plus practical games and ideas to encourage feeding.

Further information on drooling, the unintentional loss of saliva from the mouth.

Further information

ARCOS (Association for Rehabilitation of Communication and Oral Skills)
Tel: 01684 576795
Website: www.arcos.org.uk
Association for rehabilitation of communication and oral skills.

BSDH (British Society for Disability and Oral Health)
Website: www.bsdh.org.uk
Mainly aimed at professions but also has sections of information for the public.

Disabled Living Foundation
Tel: 0845 130 9177 (Helpline. local rate) or 0300 999 0004

Switchboard: 0207 289 6111
Website: www.dlf.org.uk
Experts on all aspects of equipment for disabled people (adults and children).

PINNT AND HALFf PINNT
Tel: 01582 765238
Website: www.pinnt.co.uk
Offers advice to parents of children on tube, naso-gastric or intravenous feeding.

PINNT (Patients on Intravenous and Naso-gastric Nutrition Therapy)
Tel: 01202 481625
Website: www.pinnt.com
Voluntary organisation supporting people requiring nutrition therapy. Children’s group called Half PINNT (see above).

Nutritionist Resource

Tel: 0844 803 0244
Website: www.nutritionist-resource.org.uk
Website that allows you to search for a qualified and registered nutritionist in your area.

Contact Scope Response for information, advice and support on cerebral palsy and disability issues.

This information was last reviewed June 2013

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