Coping with speech and language difficulties

Communication difficulties (like problems with speaking and understanding language) are a common side-effect of a brain tumour. However, if you, or your loved one, are affected, some of the following coping strategies may help you continue with your daily life and feel more confident again.

Frustrated by difficulties when talking to people?

Use BRIAN’s quality-of-life tracker to record when and how severely you have problems with comminication. Then share this with your healthcare team to get the support you need.

What impact can language difficulties have?

Not everyone with a brain tumour will experience speech and language, or they may be so mild that they don’t greatly affect daily life. But, if you are affected, you may feel angry and in despair, embarrassed, less confident, and anxious in social situations. 

It could also affect your employment and therefore your finances too. So you can begin to feel emotionally ‘cut off’ and isolated. Unfortunately, this means depression isn’t uncommon.

However, you’re not alone. There are people you can turn to and things you can do. And we’re with you every step of the way; before, during and after diagnosis.

The first half of this page mostly concerns advice for those living with a brain tumour diagnosis. Learn more about the help available for carers, friends and family of somebody affected.

Speech therapy was really worthwhile… with the help of speech therapy and my family, I did start to improve… the speech therapy helped allow my brain to come back to the point of where it can after all that trauma.

Oliver Highway

Read more of Oliver’s story and how he learnt to cope with problems with his speech and language.

What help is available if you’re experiencing speech and language difficulties?

One of the main resources available to you is speech & language therapists (SLTs). SLTs are an important source of support and can help you to understand, cope with and sometimes improve your speech and language difficulties.

An SLT will give you spoken and written tests to assess what problems you have with language and to what degree. These tests may include naming objects, engaging in conversation, telling a story or joke and writing a shopping list. Therapists use various tools and exercises to work with you towards:

• relearning lost or damaged communication skills (if possible)
• making the best use of remaining communication skills
• finding new ways of communicating.

And remember, we’re here with you every step of the way, offering you, and your loved ones, impartial guidance, expert information or simply someone to talk to. All our information and support services are available free of charge, including our benefits clinic, which provides advice on the financial support that you may be eligible for.

JAM cards

You may find getting a Just a Minute (JAM) card useful. This is a small card that explains to people (such as shop assistants or receptionists) that you have a difficulty, helping you get some patience and understanding, feel better able to cope and save you energy.

Brain Injury Identity Card

You may also find getting a Brain Injury Identity Card useful. This free card, designed by Headway the brain injury association, help police officers and staff to easily identify brain injury survivors and ensure that the receive the appropriate response and support. Each card is personalised, helping the card holder explain the effects of their brain injury and request any specific support they may need.

How do I get help from a speech and language therapist?

If you’re struggling to communicate, have difficulty finding the right words or are struggling to follow conversations, a speech and language therapist can help, providing strategies to help you.

If you’re interested in finding a speech and language therapist, there are different ways you can do this.

Get an NHS referral

Speak with your medical team, such as your consultant, clinical nurse specialist or GP. Explain that you think you would benefit from seeing a speech and language therapist, and they can make a referral to your local team for you.

Keep in mind that there can often be a little bit of a wait for a referral, so make sure you have these conversations as soon as possible.

Refer yourself

You can also refer yourself to your local Speech and Language Therapy Department.

To do this, contact your local NHS service or GP and ask for the contact details of the local NHS Speech and Language Therapy Service, you can then get in touch with them directly.

Go private

Some people also consider seeing a private or independent SLT. If this is something you’re interested in, the Association of Speech and Language Therapists in Independent Practice (ASLTIP) can help you find the right therapist for you.

They have a database of therapists on their website, which allows you to search in your local area for specific, independent SLTs. You can filter your search based on your age, what type of therapy or support you’re looking for and how far you’re willing to travel.

When looking for the right SLT for you, we recommend you search for therapists who work with adults with acquired brain injuries as this is likely to include brain tumours.

You can also look on the Royal College of Speech and Language Therapists website. They have lots of information about different types of speech and language therapy and how you can find therapists.

When the improvements from my speech therapy got to a peak, I was adding to that by trying to push myself to continue speaking to my friends and, if I got something wrong I asked for help… I even started walking down the town and speaking to people as much as I could there.

Oliver Highway

What changes can I make to help with my difficulties?

If you’re experiencing speech and language difficulties, there are some techniques to help you better manage your communication difficulties.

Speech and Language Therapist Rehana Begum suggests five simple techniques to help. You can:

1. Keep a notepad handy to write down important information. You can also put up a noticeboard, calendar or keep post it notes in a visible place with reminders on them. Or you can use your phone.
2. Repeat information to yourself.
3. Try to create a relaxed environment as dysphasia often worsens with stress
4. Reduce background noise and distractions
5. Consider taking a break if you’re tired.

For more tips to help your speech and language, Neuro-oncology specific Speech and Language Therapist at The Christie NHS Foundation Trust, Julie Emerson shares more techniques you can use.

Read Julie’s tips

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What help is available for carers, friends and family of somebody experiencing speech and language difficulties?

When somebody experiences speech and language difficulties, the people around them are also affected. Carers, family and friends often report feeling lonely and isolated. They can feel helpless or even guilty watching their loved one struggle to communicate.

For this reason, it’s important that carers look after themselves too. It’s well-known, but often forgotten, that you can only care well if you care for yourself. And it can be easy as a carer to forget that you deserve to be taken care of too.

While it’s important you’re in good health (mental and physical) so you can care for your loved one, it’s also important you remember to take care of yourself for you too.

Being a carer is a selfless and difficult thing to do, and likely not something you ever expected or wished to be doing. So be kind to yourself and remember to take a short break, a day away from it all or take time to share with a loved one. This can be as simple as finding out more about the support available for carers.

Speech and Language Therapist Rehana Begum says, “It can be challenging to support someone with a communication difficulty. You may experience a range of difficulties and emotions such as:

• Helplessness
• Isolation and loneliness
• Strain on close relationships
• Depression
• Frustration
• Embarrassment
• Tiredness

Remember to consult your GP or your loved one’s specialist team for support.”

What changes can I make to help the person with speech problems?

If you’re a carer for someone with language difficulties, or a friend or family member, one key way to help is by being supportive and adapt to the way they communicate.

Neuro-oncology specific Speech and Language Therapist at The Christie NHS Foundation Trust, Julie Emerson shares some of the main things to remember when speaking to someone with language problems. Remember they:

• are still an intelligent person
• know what they want to say
• can still make their own decisions.

For more tips on helping someone who’s experiencing speech and language difficulties, Julie Emerson shares more techniques you can use.

Read Julie’s tips

There are many organisations that specialise in equipment, or other forms of support, for people with communication difficulties.

If you have further questions, need to clarify any of the information on this page, or want to find out more about research and clinical trials, please contact our team:

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support@thebraintumourcharity.org

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