What is the problem?

A well-balanced diet is vital for the body and all its systems to function properly.

Problems with chewing, swallowing, reflux and absorption of nutrients and minerals can mean a person with CP doesn’t take in what they need. The consequences of this may include low energy levels, constipation, digestion problems and poor appetite.

What is dysphagia?

Dysphagia describes eating, drinking and swallowing difficulties in infants, children and young people and adults. It often occurs with people with cerebral palsy, and difficulty with swallowing affects between 31-99% for children with cerebral palsy.

When you get older you may begin to have problems eating, drinking, and swallowing due to the loss of muscle mass and strength. If not treated appropriately, dysphagia can lead to other health complications and it may also influence your quality of life, as eating and drinking is important for social life. Improved nutrition and hydration have an impact on physical and mental wellbeing

Early identification and management of dysphagia by speech and language therapists is important and if you notice changes in your eating and drinking it is important that you seek advice. If dysphagia is not managed well then you can be at risk of choking, pneumonia, chest infection, dehydration, malnutrition, or weight loss. It can also make taking medication more difficult. However, this can be avoided if you seek support.


Symptoms to look out for:

Sometimes changes in your swallow can be subtle. Here are some signs and symptoms that might suggest that some changes are occurring.

Managing your food

Sometimes there is a difficulty with the mechanics and coordination of your swallow. This can mean that it is difficult to manage your food and liquid when eating. There is a possibility that your food and drink can end up in your windpipe and enter your lung instead of travelling via your oesophagus and into your stomach.

Signs of this include:

  • Choking on food and fluids
  • Choking regularly when taking medication
  • Food or fluid escaping from your nose or corners of your mouth during or after eating
  • Finding that food is gets stuck under your tongue or in your cheeks
  • Changes in your voice quality – sounding wet, husky or just that it is harder to talk
  • Recurrent chest infections
  • Weight loss

Changes in food routines

Changes in what you like to eat and drink and the time of day you like to eat might also suggest that food and drink are becoming harder to manage.  Look out for

  • Changes in food preferences and food avoidance – this can be a sign that it is becoming difficult to manage different textures of food e.g food that is too hard or too crunchy
  • Finding that eating or drinking is easier dependant on the time of day and level of fatigue


Other things that impact how you eat and drink can include:

  • Changes in your hand-eye coordination which makes eating independently more difficult
  • Changes in your posture
  • Finding that you are more dependent on someone else to help you during mealtimes
  • Changes in dentition and if dentures become loose or are poorly fitting
  • Reduction in your ability to manage your oral hygiene
  • Levels of fatigue – consider the length of time it is taking to eat a meal. It shouldn’t be taking any longer than 30 minutes
  • Changes in your drugs can affect saliva production, give you a dry mouth or affect your taste

How do we manage it?

How to get an assessment

A Speech and Language therapist can make suggestions about the type of foods and drink that is safe and easier for you to manage as well as any equipment and changes in your seating and posture that may help. They often work in conjunction with their Occupational Therapists and Dieticians

Speech and Language Therapy departments operate an open referral system which means any one can make a referral on your behalf e.g. G.P, Consultant, OT, Physio, dietitian or social worker.

You can also make a self-referral into your local service.  You can find the contact details for your local service on NHS Choices website where you can search for your local service.
Find Swallowing services – NHS (www.nhs.uk)

If you are looking to access a private therapist you can search therapists in your local area by postcode through the Association of Speech therapists in Independent Practice (ASLTIP).www.helpwithtalking.com 

What would an assessment of my eating and drinking look like?

Ideally an assessment of your eating, drinking and swallowing would take place in your own home during a mealtime. Sometimes it can happen in a hospital outpatient department. If so, you may be asked to take with you any of your preferred foods or foods you are getting worried about.

An assessment usually comprises of a detailed case history followed by watching you eat and drink. The Speech and Language Therapist may also want to look inside your mouth, touch your cheeks and put her fingers on your throat while you swallow. He or she will also be listening and observing you as you are talking to look at your posture, listening to your voice quality and watching at how well you are able to control your saliva.

After the assessment a Speech and Language Therapist may make recommendations on the:

  • Types and textures of food
  • The pacing of your eating and drinking
  • Your mealtime routine
  • Support utensils and equipment that would be helpful
  • Your posture and positioning
  • Advice on exercises or head positioning.
  • Onward referral to the MDT e.g Occupational Therapy, dietician, pharmacist.

Sometimes an onward referral might be needed for further investigations. These might include FES or video fluoroscopy.

All decisions should be made with you, not for or about you, and considering your quality of life and preferences. There may be a need to have ongoing reviews and usually your referral is left open so that you can be picked up again easily should you need further ongoing advice in the future.


What helps whilst I am waiting for a referral?

Drinking

If you have trouble when drinking this can mean that some of your drink is going into your airway instead of your food pipe, and it may be continuing into your lungs.  If that happens regularly, it can cause you to get chest infections, as your lungs try to fight off the foreign substance.

Here are some things you can try, to avoid this happening:

  • make sure you are sitting upright, preferably in a chair at a table
  • drink from a wide rimmed cup or glass and avoid tilting your head back
  • take one sip at a time, rather than ‘glugging’ your drink
  • concentrate while you’re drinking; try to avoid any distractions
  • have a thicker drink, e.g. a Horlicks or a milkshake, and see if you swallow it better.

Eating

  • avoiding some foods that are harder to chew and swallow e.g. nuts, biscuits, steak or salad.
  • Adding moisture to your foods (e.g. gravy, sauce, cream, custard) can often help it go down
  • If you feel you can swallow, but have difficulty chewing your food because of problems with your teeth, please see a dentist.

To help your swallow

  • Avoid eating and drinking when tired or drowsy.
  • Do not mix food and drink in the same mouthful.
  • Do not put too much in your mouth at one time.
  • Do not take food and drink too quickly – go slowly, allowing plenty of time for your throat to clear. Take extra ‘empty’ swallows if you need to.
  • Keep your mouth clean to reduce the risk of infection.
  • Remove any bits of food left in your mouth after eating – this prevents choking later on.
  • Do not use a straw or spouted feeding beaker – unless advised to do so.
  • Concentrate on eating – avoid distractions such as the television, conversations or lots of people.
  • Choose the sorts of foods and drinks that cause the least problems. Your speech and language therapist will give you detailed advice.
  • Medications should be taken in the form that causes the least problems – ask your pharmacist or doctor for advice.

Diet and Nutrition

At Midweek Matters we were joined by Leah, a Nutritionist, and Sophie, a Dietician, who explored how food and nutrition can promote health and manage disease. As part of their roles, they can plan and conduct nutritional programs to help people lead healthy lives. Living with CP can put different demands on our bodies. How can what we eat help us with pain, fatigue, constipation and weight loss? Check out their advice below.

1. Maintain a healthy weight by following the Eatwell guide
2. If underweight, opt for little and often and choose nourishing meals and snacks
3. Ensure you get enough calcium and vitamin D
4. Ensure a source of protein at each meal e.g. eggs, meat, fish, beans, pulses, dairy, soya or alternatives
5. Don’t believe everything you read on the news! Myths are out there, speak with a dietitian or nutritionist to dispel those myths!

Resources

Useful links

Midweek Matters Speaker Session – Judith Broll

Research

Eating and drinking ability and nutritional status in adults with cerebral palsy
Anita McAllister, Eva Sjöstrand, Elisabet Rodby-Bousquet

Adults with CP should be routinely screened and treated for dysphagia to avoid nutritional complications. Being dependent on others during mealtimes is a risk factor for low body weight.
https://onlinelibrary.wiley.com/doi/10.1111/dmcn.15196

Scarlett Murray is a 22 year-old mother of one, and a talented writer who blogs about her experiences of living with Cerebral Palsy. Her form of CP is left-sided hemiphlegia. She tells us her story.

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Young woman with little girl (Scarlett Murray and daughter)

Clive Gilbert is a leading policy expert on assistive technology for disabled people, drawing in part, on his own experiences living with Cerebral Palsy. He tells us his story.

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Man using assistive technology (Clive Gilbert)